Communicating prognosis with parents of critically ill infants: direct observation of clinician behaviors.

OBJECTIVE: Delivering prognostic information to families requires clinicians to forecast an infant's illness course and future. We lack robust empirical data about how prognosis is shared and how that affects clinician-family concordance regarding infant outcomes. STUDY DESIGN: Prospective audiorecording of neonatal intensive care unit family conferences, immediately followed by parent/clinician surveys. Existing qualitative analysis frameworks were applied. RESULTS: We analyzed 19 conferences. Most prognostic discussion targeted predicted infant functional needs, for example, medications or feeding. There was little discussion of how infant prognosis would affect infant/family quality of life. Prognostic framing was typically optimistic. Most parents left the conference believing their infant's prognosis to be more optimistic than did clinicians. CONCLUSIONS: Clinician approach to prognostic disclosure in these audiotaped family conferences tended to be broad and optimistic, without detail regarding implications of infant health for infant/family quality of life. Families and clinicians left these conversations with little consensus about infant prognosis.

Does it matter what you call it? A randomized trial of language used to describe palliative care services.

INTRODUCTION: Integration of palliative care into oncology practice remains suboptimal. Misperceptions about the meaning of palliative care may negatively impact utilization. PURPOSE: We assessed whether the term and/or description of palliative care services affected patient views. METHODS: 2x2 between-subject randomized factorial telephone survey of 169 patients with advanced cancer. Patients were randomized into one of four groups that differed by name (supportive care vs. palliative care) and description (patient-centered vs. traditional). Main outcomes (0-10 Likert scale) were patient understanding, impressions, perceived need, and intended use of services. RESULTS: When compared to palliative care, the term supportive care was associated with better understanding (7.7 vs. 6.8; p = 0.021), more favorable impressions (8.4 vs. 7.3; p = 0.002), and higher future perceived need (8.6 vs. 7.7; p = 0.017). There was no difference in outcomes between traditional and patient-centered descriptions. In adjusted linear regression models, the term supportive care remained associated with more favorable impressions (p = 0.003) and higher future perceived need (p = 0.022) when compared to palliative care. CONCLUSIONS: Patients with advanced cancer view the name supportive care more favorably than palliative care. Future efforts to integrate principles of palliative medicine into oncology may require changing impressions of palliative care or substituting the term supportive care.

Palliative care education in gynecologic oncology: a survey of the fellows.

INTRODUCTION: Gynecologic oncologists regularly care for patients at the end of life, yet little is known about their training or preparedness to deal with issues of palliative care. We sought to examine the training provided to gynecologic oncology fellows as well as their perceived preparedness to provide palliative care. METHODS: A self-administered survey was distributed to all fellows enrolled in all gynecologic oncology fellowships during the 2009 academic year. The instrument assessed attitudes, training, experience, and preparedness regarding caring for patients at the end of life. Descriptive, bivariate and multivariable analyses were performed. RESULTS: Sixty-one percent (103/168) of fellows completed the survey. Most (89%) feel that palliative care is integral to their training, but few (11%) have had any palliative care training, including either a rotation or fellowship. Using a scale of 1-10, fellows rated teaching quality on two common training opportunities, specifically managing postoperative complications (7.8) and endometrial cancer patients (8.7), as significantly higher than teaching on managing patients at the end of life (5.5; p<0.001). Fellows rated the quality of end of life teaching as significantly lower than overall teaching (55% vs. 92%; p=0.001). Their self-assessment regarding overall preparedness to deal with end of life issues was associated with higher end of life teaching quality and experience caring for more than 10 dying patients. CONCLUSIONS: The quantity and quality of training in palliative care are lower compared to other common procedural and oncological issues. Gynecologic oncology fellowship programs need to incorporate a palliative care training curriculum.

Neonatal Critical Care Communication (NC3): training NICU physicians and nurse practitioners.

OBJECTIVE: Communicating with families is a core skill for neonatal clinicians, yet formal communication training rarely occurs. This study examined the impact of an intensive interprofessional communication training for neonatology fellows and nurse practitioners. STUDY DESIGN: Evidence-based, interactive training for common communication challenges in neonatology incorporated didactic sessions, role-plays and reflective exercises. Participants completed surveys before, after, and one month following the training. RESULT: Five neonatology fellows and eight nurse practitioners participated (n=13). Before the training, participants overall felt somewhat prepared (2.6 on 5 point Likert-type scale) to engage in core communication challenges; afterwards, participants overall felt very well prepared (4.5 on Likert-type scale) (P<0.05). One month later, participants reported frequently practicing the taught skills and felt quite willing to engage in difficult conversations. CONCLUSION: An intensive communication training program increased neonatology clinicians' self-perceived competence to face communication challenges which commonly occur, but for which training is rarely provided.

Acute care practices relevant to quality end-of-life care: a survey of Pennsylvania hospitals.

BACKGROUND: Improving end-of-life care in the hospital is a national priority. PURPOSE: To explore the prevalence and reasons for implementation of hospital-wide and intensive care unit (ICU) practices relevant to quality care in key end-of-life care domains and to discern major structural determinants of practice implementation. DESIGN: Cross-sectional mixed-mode survey of chief nursing officers of Pennsylvania acute care hospitals. RESULTS: The response rate was 74% (129 of 174). The prevalence of hospital and ICU practices ranged from 95% for a hospital-wide formal code policy to 6% for regularly scheduled family meetings with an attending physician in the ICU. Most practices had less than 50% implementation; most were implemented primarily for quality improvement or to keep up with the standard of care. In a multivariable model including hospital structural characteristics, only hospital size independently predicted the presence of one or more hospital initiatives (ethics consult service, OR 6.13, adjusted p = 0.02; private conference room in the ICU for family meetings, OR 4.54, adjusted p<0.001). CONCLUSIONS: There is low penetration of hospital practices relevant to quality end-of-life care in Pennsylvania acute care hospitals. Our results may serve to inform the development of future benchmark goals. It is critical to establish a strong evidence base for the practices most associated with improved end-of-life care outcomes and to develop quality measures for end-of-life care to complement existing hospital quality measures that primarily focus on life extension.

Adolescent mothers in the NICU: how much do they understand?

OBJECTIVE: We aimed to characterize adolescent parents' understanding of their infant's diagnosis, treatment and illness severity in the intensive care unit. STUDY DESIGN: Adolescent mothers were interviewed and neonatal medical records were reviewed. RESULT: Forty-two teens were interviewed. All had spoken with providers: 86% with nurses, 60% with physicians and 45% with both. Most teens could name their infant's diagnosis and treatment but often underestimated the illness severity. Teens reported reluctance to ask providers to clarify technical language. Those who said they spoke with a physician were less likely to understand their infant's illness severity than those who said they had not spoken with a physician (48 vs 82%). Parents' knowledge was better if physicians had documented explicit efforts to communicate with parents. CONCLUSION: Teens often underestimated the critical nature of their infant's illness. Future work should target adolescent willingness to ask questions and provider ability to accurately gauge parent knowledge.

Sociodemographic differences in early access to liver transplantation services.

The question of whether health care inequities occur before patients with end-stage liver disease (ESLD) are waitlisted for transplantation has not previously been assessed. To determine the impact of gender, race and insurance on access to transplantation, we linked Pennsylvania sources of data regarding adult patients discharged from nongovernmental hospitals from 1994 to 2001. We followed the patients through 2003 and linked information to records from five centers responsible for 95% of liver transplants in Pennsylvania during this period. Using multinomial logistic regressions, we estimated probabilities that patients would undergo transplant evaluation, transplant waitlisting and transplantation itself. Of the 144,507 patients in the study, 4361 (3.0%) underwent transplant evaluation. Of those evaluated, 3071 (70.4%) were waitlisted. Of those waitlisted, 1537 (50.0%) received a transplant. Overall, 57,020 (39.5%) died during the study period. Patients were less likely to undergo evaluation, waitlisting and transplantation if they were women, black and lacked commercial insurance (p < 0.001 each). Differences were more pronounced for early stages (evaluation and listing) than for the transplantation stage (in which national oversight and review occur). For early management and treatment decisions of patients with ESLD to be better understood, more comprehensive data concerning referral and listing practices are needed.

Hospital staff attributions of the causes of physician variation in end-of-life treatment intensity.

Discrepancies between patient wishes and end-of-life treatment decisions have been documented, and the determinants of end-of-life treatment decisions are not well understood. Our objective was to understand hospital staff perceptions of the role of acute care hospital medical doctors in end-of-life treatment intensity. In 11 purposively sampled Pennsylvania hospitals, we completed 108 audiotaped semistructured interviews with key informants involved in decision making or discharge planning. Using grounded theory, we qualitatively analysed transcripts using constant comparison to identify factors affecting end-of-life treatment decisions. A predominant theme identified was that end-of-life treatment intensity depends on the doctor. Communication with patients and families and collaboration with other care team members also were reported to vary, contributing to treatment variation. Informants attributed physician variation to individual beliefs and attitudes regarding the end-of-life (religion and culture, determination of when a patient is dying, quality-of-life determination and fear of failing) and to socialization by and interaction with the healthcare system (training, role perception, experience and response to incentives). When end-of-life treatment depends on the doctor, patient and family preferences may be neglected. Targeted interventions may reduce variability and align end-of-life treatment with patient wishes.

Pilot testing of a question prompt sheet to encourage family caregivers of cancer patients and physicians to discuss end-of-life issues.

Family members of patients with advanced illness have many questions. Unfortunately, several barriers prevent caregivers from discussing their questions with the physicians caring for the patient. Although question prompt sheets can be helpful in overcoming barriers to communication, few have been developed for family caregivers. The goal of this study, therefore, was to develop and test the acceptability and feasibility of a short question prompt sheet designed to encourage discussions about end-of-life concerns in an outpatient palliative care clinic. Our results demonstrated that caregivers wanted to discuss a variety of questions, primarily questions about medications, symptoms, support services, and what to expect. All caregivers thought that the question prompt sheet was easy to understand and felt comfortable completing it in clinic and the majority reported that the question prompt sheets made it easier for them to ask questions.

Do incentives matter? Providing benefits to families of organ donors.

Whether the number of organs available for transplant would be positively or negatively affected by providing benefits to families of organ donors has been debated by policymakers, ethicists and the transplant community at large. We designed a telephone survey to measure public opinion regarding the use of benefits in general and of five types in particular: funeral benefits, charitable contributions, travel/lodging expenses, direct payments and medical expenses. Of the 971 adults who completed the survey (response rate = 69%), all were from Pennsylvania households, 45.6% were registered organ donors, and 51.7% were nonwhite. Although 59% of respondents favored the general idea of incentives, support for specific incentives ranged from 53% (direct payment) to 84% (medical expenses). Among those registered as donors, more nonwhites than whites supported funeral benefits (88% vs. 81%; p = 0.038), direct payment (63% vs. 41%; p < 0.001) and medical expenses (92% vs. 84%; p = 0.013). Among those not registered as donors, more nonwhites supported direct payment (64% vs. 46%; p = 0.001). Most respondents believed that benefits would not influence their own behavior concerning donation but would influence the behavior of others. While benefits appear to be favored, their true impact can only be assessed through pilot programs.

Patient satisfaction in resident and attending ambulatory care clinics.

OBJECTIVE: To measure and compare patient satisfaction with care in resident and attending physician internal medicine ambulatory care clinics. DESIGN: A cross-sectional survey using a questionnaire derived from the Visit-Specific Satisfaction Questionnaire (VSQ) and Patient Satisfaction Index (PSI) distributed from March 1998 to May 1998. SETTING: Four clinics based at a university teaching hospital and the associated Veterans' Affairs (VA) hospital. PARTICIPANTS: Two hundred eighty-eight patients of 76 resident and 25 attending physicians. RESULTS: Patients of resident physicians at the university site were more likely to be African American, male, have lower socioeconomic status and have lower physical and mental health scores on the Short Form-12 than patients of university attendings. Patients of resident and attending physicians at the VA site were similar. In multivariate analyses, patients of university attending physicians were more likely to be highly satisfied than patients of university residents on the VSQ-Physician (odds ratio [OR], 3.5; 95% confidence interval [CI], 1.6 to 7.8) and the PSI-Physician (OR, 10.1; 95% CI, 3.7 to 27.4) summary scores. Differences were not seen on the summary scores at the VA site. Two individual items displayed significant differences between residents and attendings at both sites: "personal manner (courtesy, respect, sensitivity, friendliness) of the doctor" (P

Philosophical debates about the definition of death: who cares?

Since the Harvard Committee's bold and highly successful attempt to redefine death in 1968 (Harvard Ad Hoc committee, 1968), multiple controversies have arisen. Stimulated by several factors, including the inherent conceptual weakness of the Harvard Committee's proposal, accumulated clinical experience, and the incessant push to expand the pool of potential organ donors, the lively debate about the definition of death has, for the most part, been confined to a relatively small group of academics who have created a large body of literature of which this issue of the Journal of Medicine and Philosophy is an example. Law and public policy, however, have remained essentially unaffected. This paper will briefly review the multiple controversies about defining death in an attempt to explain why they have and will remain unresolved in the academic community and have even less chance of being understood and resolved by politicians, legislators, and the general public. Considering this, we will end by suggesting the probable course of public policy and clinical practice in the decades ahead.

Factors influencing families' consent for donation of solid organs for transplantation.

CONTEXT: Transplantation has become the therapy of choice for patients with organ failure. However, the low rate of consent by families of donor-eligible patients is a major limiting factor in the success of organ transplantation. OBJECTIVE: To explore factors associated with the decision to donate among families of potential solid organ donors. DESIGN AND SETTING: Data collection via chart reviews, telephone interviews with health care practitioners (HCPs) or organ procurement organization (OPO) staff, and face-to-face interviews with family for all donor-eligible deaths at 9 trauma hospitals in southwestern Pennsylvania and northeastern Ohio from 1994 to 1999. PARTICIPANTS: Family members, HCPs, and OPO staff involved in the donation decision for 420 donor-eligible patients. MAIN OUTCOME MEASURE: Factors associated with family decision to donate or not donate organs for transplantation. RESULTS: A total of 238 of the 420 cases led to organ donation; 182 did not. Univariate analysis revealed numerous factors associated with the donation decision. Multivariable analysis of associated variables revealed that family and patient sociodemographics (ethnicity, patient's age and cause of death) and prior knowledge of the patients' wishes were significantly associated with willingness to donate (adjusted odds ratio [OR], 7.68; 95% confidence interval [CI], 6.55-9.01). Families who discussed more topics and had more conversations about organ donation were more likely to donate (adjusted OR, 5.22; 95% CI, 4.32-6.30), as were families with more contact with OPO staff (adjusted OR, 3.08; 95% CI, 2.63-3.60) and those who experienced an optimal request pattern (adjusted OR, 2.96; 95% CI, 2.58-3.40). Socioemotional and communication variables acted as intervening variables. CONCLUSIONS: Public education is needed to modify attitudes about organ donation prior to a donation opportunity. Specific steps can be taken by HCPs and OPO staff to maximize the opportunity to persuade families to donate their relatives' organs.

The process of organ donation and its effect on consent.

OBJECTIVE: To identify those factors that enhance or inhibit organ donation in order to provide data to help policy makers, hospital administrators and transplantation professionals make informed choices about how to modify the donor system and to structure 'best practice' interventions. SUMMARY OF BACKGROUND DATA: Legislative efforts to increase donation rates have not been successful. An emphasis on process is needed to help explain this. METHODS: The study was conducted using a stratified random sample of 23 hospitals in the Pittsburgh and Minneapolis/St Paul standard statistical metropolitan areas. Each week, the medical charts of all in-patient and emergency room patient deaths at each hospital were reviewed using a standardized review protocol to determine eligibility for organ, tissue, and cornea donation. A total of 10,681 patient charts were reviewed over a 4-yr period. Eight hundred and twenty-eight cases out of 1,723 eligible cases were selected for inclusion in the study. Data were collected on 827 of these cases. All health care providers (HCPs) who spoke with the family after the patient's death or discussed donation with the family were interviewed. RESULTS: Of the 10,681 patient charts reviewed, 16.5% were eligible to donate either organs, tissues, or corneas, and 87.0% of donor-eligible patients' families were approached and asked to donate. Consent rates were 23.5% for corneas, 34.5% for tissues, and 46.5% for organ donation. Multiple logistic regression demonstrated that the best and strongest predictor of donation decisions was the family's initial response to the donation request, as reported by the HCP. Three initial response groups are examined and compared. Those families who expressed an initially favorable reaction were most likely to agree to donation. Furthermore, discussion patterns differed by initial reaction group, with families who expressed initial indecision about donation sharing more characteristics with families who were not favorable than those who were favorable. More detailed information was provided to the favorable families, as compared to the other two groups, concerning the effect of donation on funeral arrangements and costs. Families who were favorable were also more likely to meet with an organ procurement organization representative than were other families. The strongest predictor of a family's unfavorable response to a donation request was the belief that the patient would have been against donation. A number of other variables, including HCP attitudes, also had an impact on the family's decision to donate. CONCLUSIONS: A number of discussion and HCP characteristics are associated with a family's willingness to consent to organ donation. Further study is needed to determine if interventions based on the characteristics identified in this study will increase consent to donation.

Palliative care and the hospitalist: an opportunity for cross-fertilization.

Most US citizens die in acute care hospitals, often in physical pain, without attention to emotional and spiritual suffering. This represents an ethical failure of our current health-care system. The field of palliative medicine aims to address the physical, emotional, and spiritual needs of patients with advanced disease. At the same time, a new specialty of hospitalists is emerging, providing care for acutely ill hospitalized patients, many of whom will die. Thus, the hospitalist may become the primary deliverer of palliative care. This presents many potential opportunities for dying patients and their families, including increased time and attention from a physician; enhanced knowledge and skills around the physical symptoms, and emotional and spiritual distress; perhaps more detached and therefore more accurate prognostication; and increased efficiency, leading to a more rapid discharge to home. Hospitalists could enhance the quality of care for the dying by emphasizing interdisciplinary communication and involvement of hospital-based health professionals to address emotional and spiritual distress and bereavement issues, as well as through specific quality-improvement efforts. Finally, hospitalists can provide strong role modeling of optimal care for dying patients and their families. When hospitalists are not selected and trained effectively around palliative care issues, the risks are great. Discontinuity of physicians can lead to miscommunication and misunderstanding (by professionals, patient, and family); disagreement about treatment focus (especially as it relates to a shift from curative to palliative); inappropriate deferring of advance care planning to the hospital setting; and, most worrisome, a lack of expertise in symptom control, communication skills, and attention to patient and family distress and the provision of emotional and spiritual support. This article evaluates the convergence of the 2 fields of palliative medicine and hospitalist medicine and reviews the opportunities for mutual education and improved patient care.

Experts practice what they preach: A descriptive study of best and normative practices in end-of-life discussions.

BACKGROUND: Advance directives (ADs) are widely regarded as the best available mechanism to ensure that patients' wishes about medical treatment at the end of life are respected. However, observational studies suggest that these discussions often fail to meet their stated goals. OBJECTIVES: To explore best practices by describing what physicians who are considered expert in the area of end of-life bioethics or medical communication do when discussing ADs with their patients and to explore the ways in which best practices of the expert group might differ in content or style from normative practice derived from primary care physicians' discussions of ADs with their patients collected as part of an earlier study. DESIGN: Nonexperimental, descriptive study of audiotaped discussions. SETTING: Outpatient primary care practices in the United States. PARTICIPANTS: Eighteen internists who have published articles in the areas of bioethics or communication and 48 of their patients. Fifty-six academic internists and 56 of their established patients in 5 practice sites in 2 locations-Durham, NC, and Pittsburgh, Pa. Eligible patients were at least 65 years old or suffered from serious medical illness and had not previously discussed ADs with their physician. Expert clinicians had discretion regarding patient selection, while the internists chose patients according to a predetermined protocol. MEASUREMENTS: Coders applied the Roter Interaction Analysis System (RIAS) to audiotapes of the medical visits to describe communication dynamics. In addition, the audiotapes were scored on 21 items reflecting physician performance in specific skills related to AD discussions. RESULTS: Experts spent close to twice as much time (14.7 vs 8.1 minutes, P<.001) and were less verbally dominant (P<.05) than other physicians during AD discussions. When length of visit was controlled statistically, the expert physicians gave less information about treatment procedures and biomedical issues (P<.05) and asked fewer related questions (P<. 05) but tended toward more psychosocial and lifestyle discussion and questions. Experts engaged in more partnership building (P<.05) with their patients. Patients of the expert physicians engaged in more psychosocial and lifestyle discussion (P<.001), and more positive talk (P<.05) than patients of community physicians. Expert physicians scored higher on the 21 items reflecting AD-specific skills (P<.001). CONCLUSIONS: Best practices as reflected in the performance of expert physicians reflect differences in measures of communication style and in specific AD-related proficiencies. Physician training in ADs must be broad enough to include both of these domains. Arch Intern Med. 2000;160:3477-3485.

Lying to each other: when internal medicine residents use deception with their colleagues.

BACKGROUND: While lying is morally problematic, physicians have been known to use deception with their patients and with third parties. Little is known, however, about the use of deception between physicians. OBJECTIVES: To determine the likelihood that resident physicians say they would deceive other physicians in various circumstances and to examine how variations in circumstances affect the likelihood of using deception. METHODS: Two versions of a confidential survey using vignettes were randomly distributed to all internal medicine residents at 4 teaching hospitals in 1998. Survey versions differed by introducing slight variations to each vignette in ways we hypothesized would influence respondents' willingness to deceive. The likelihood that residents say they would use deception in response to each vignette was compared between versions. RESULTS: Three hundred thirty surveys were distributed (response rate, 67%). Of those who responded, 36% indicated they were likely to use deception to avoid exchanging call, 15% would misrepresent a diagnosis in a medical record to protect patient privacy, 14% would fabricate a laboratory value to an attending physician, 6% would substitute their own urine in a drug test to protect a colleague, and 5% would lie about checking a patient's stool for blood to cover up a medical mistake. For some of the scenarios, the likelihood of deceiving was influenced by variations in the vignettes. CONCLUSIONS: A substantial percentage of internal medicine residents report they would deceive a colleague in various circumstances, and the likelihood of using deception depends on the context. While lying about clinical issues is not common, it is troubling when it occurs at any time. Medical educators should be aware of circumstances in which residents are likely to deceive, and discuss ways to eliminate incentives to lie.