A narrative review of family members' experience of organ donation request after brain death in the critical care setting.

INTRODUCTION: Family members of critically ill patients suffer from high levels of anxiety and depression in the ICU, and are at risk of developing post-ICU syndrome following ICU discharge. In the case of brain death, and potential organ donation, the family is at the center of the decision process: within a limited time frame, the family will be informed that the patient is brain-dead and will be approached about potential organ donation. MATERIALS AND METHODS: Family experience with organ donation has been the topic of several research papers allowing one to gain knowledge about family members' experience of organ donation, emphasizing specific needs, adequate support, and pointing out gaps in current delivery of family-centered care. In this narrative review, experts, clinicians, and researchers present the various legal systems regarding family implication in organ donation decisions; describe factors that influence the decision-making process; highlight family perspectives of care and respect for potential donors in the ICU environment; describe the impact of organ donation discussions and decisions on post-ICU syndrome; and suggest communication skills and support to be developed in the future. A research agenda for the next decade is also encouraged. CONCLUSION: Overall, challenges remain and concern all persons involved in the process, ICU doctors and nurses, the organ procurement organization, family members, and, in some cases, the patients themselves. Looking at the big picture will provide opportunities for further improvements.

A Comparison of Request Process and Outcomes in Donation After Cardiac Death and Donation After Brain Death: Results From a National Study.

Available literature points to healthcare providers' discomfort with donation after cardiac death (DCD) and their perception of public reluctance toward the procedure. Using a national sample, we report on the communication content of actual DCD and donation after brain death (DBD) approaches by organ procurement organization (OPO) requesters and compare family decision makers' (FDMs') experiences of both modalities. We recruited 1601 FDMs using a validated protocol; 347 (21.7%) were of potential DCD donors. Semistructured telephone interviews yielded FDMs' sociodemographic data, donation attitudes, assessment of approach, final outcomes, and substantiating reasons. Initial analysis consisted of bivariate analyses. Multilevel mixture models compared groups representing authorization outcome and DCD/DBD status. No significant differences in family authorization were found between DCD and DBD cases. Statistically significant associations were found between sociodemographic characteristics and authorization, with white FDMs more likely to authorize DCD or DBD than black FDMs. FDMs of both modalities had similar evaluations of requester skills, topics discussed, satisfaction, and refusal reasons. The findings suggest that the DCD/DBD distinction may not be notable to families. We recommend the use of similar approach strategies and communication skills and the development of education campaigns about the public's acceptance of DCD.

Regional Differences in Communication Process and Outcomes of Requests for Solid Organ Donation.

Although federal mandate prohibits the allocation of solid organs for transplantation based on "accidents of geography," geographic variation of transplantable organs is well documented. This study explores regional differences in communication in requests for organ donation. Administrative data from nine partnering organ procurement organizations and interview data from 1339 family decision makers (FDMs) were compared across eight geographically distinct US donor service areas (DSAs). Authorization for organ donation ranged from 60.4% to 98.1% across DSAs. FDMs from the three regions with the lowest authorization rates reported the lowest levels of satisfaction with the time spent discussing donation and with the request process, discussion of the least donation-related topics, the highest levels of pressure to donate, and the least comfort with the donation decision. Organ procurement organization region predicted authorization (odds ratios ranged from 8.14 to 0.24), as did time spent discussing donation (OR = 2.11), the number of donation-related topics discussed (OR = 1.14), and requesters' communication skill (OR = 1.14). Standardized training for organ donation request staff is needed to ensure the highest quality communication during requests, optimize rates of family authorization to donation in all regions, and increase the supply of organs available for transplantation.

Promoting Shared Decision Making in Disorders of Sex Development (DSD): Decision Aids and Support Tools.

Specific complaints and grievances from adult patients with disorders of sex development (DSD), and their advocates center around the lack of information or misinformation they were given about their condition and feeling stigmatized and shamed by the secrecy surrounding their condition and its management. Many also attribute poor sexual function to damaging genital surgery and/or repeated, insensitive genital examinations. These reports suggest the need to reconsider the decision-making process for the treatment of children born with DSD. This paper proposes that shared decision making, an important concept in adult health care, be operationalized for the major decisions commonly encountered in DSD care and facilitated through the utilization of decision aids and support tools. This approach may help patients and their families make informed decisions that are better aligned with their personal values and goals. It may also lead to greater confidence in decision making with greater satisfaction and less regret. A brief review of the past and current approach to DSD decision making is provided, along with a review of shared decision making and decision aids and support tools. A case study explores the need and potential utility of this suggested new approach.

Interim results of a national test of the rapid assessment of hospital procurement barriers in donation (RAPiD).

Organ donation remains a major public health challenge with over 114 000 people on the waitlist in the United States. Among other factors, extant research highlights the need to improve the identification and timely referral of potential donors by hospital healthcare providers (HCPs) to organ procurement organizations (OPOs). We implemented a national test of the Rapid Assessment of hospital Procurement barriers in Donation (RAPiD) to identify assets and barriers to the organ donation and patient referral processes; assess hospital-OPO relationships and offer tailored recommendations for improving these processes. Having partnered with seven OPOs, data were collected at 70 hospitals with high donor potential in the form of direct observations and interviews with 2358 HCPs. We found that donation attitudes and knowledge among HCPs were high, but use of standard referral criteria was lacking. Significant differences were found in the donation-related attitudes, knowledge and behaviors of physicians and emergency department staff as compared to other staff in intensive care units with high organ donor potential. Also, while OPO staff were generally viewed positively, they were often perceived as outsiders rather than members of healthcare teams. Recommendations for improving the referral and donation processes are discussed.

Satisfaction of early breast cancer patients with discussions during initial oncology consultations with a medical oncologist.

OBJECTIVE: The purpose of this report is to extend the current understanding of patient satisfaction by examining expectations of a sample of breast cancer patients and concordance with their medical oncologists about the content of consultations and the importance of consultation items. METHODS: Three hundred and ninety-five female early stage breast cancer patients of 56 oncologists participated. Patients and oncologists completed a matched questionnaire measuring (a) met expectations, (b) concordance over content and item importance, and (c) satisfaction. RESULTS: Overall patient satisfaction was extremely high (x=91/100%) although expectations were not met at the stated level desired. Patients and physicians disagreed over what was conveyed and received. Higher overall satisfaction was predicted by levels of met expectations (unstandardized beta=0.69, p=0.008, SE=0.26) and concordance over (a) content (unstandardized beta=1.09, p=0.002, SE=0.34) and (b) importance (unstandardized beta=-0.78, p=0.006, SE 0.28). CONCLUSION: Although patient expectations were not well met and physician-patient discord was high about the content of consultations and the importance of consultation items, patients reported high levels of satisfaction. Expectation fulfillment and levels of concordance predicted satisfaction.

Adherence to immunosuppression: a prospective diary study.

Immunosuppression adherence among kidney transplant recipients is essential for graft survival. However, nonadherence is common, jeopardizing graft survival. Besides skipping dosages, little is known about other forms of medication nonadherence and their underlying reasons. This study sought to examine patients' extent of medication adherence over time and reasons for nonadherence. Thirty-nine new kidney transplant recipients were asked to complete a month-long medication-taking diary that included reporting medication nonadherence such as skipped medications, medications taken early or late, taking dosages greater or less than prescribed, and the reason for each occurrence of nonadherence. Of the 20 (51%) patients who completed the diary, 11 (55%) reported at least 1 form of nonadherence. Eleven patients reported taking their immunosuppression at least 1 hour later than the prescribed time, 1 patient reported skipping medication, but no patients reported changing the dosage on their own. Immunosuppression was taken on average 1.5 hours after the prescribed time. Of those patients who took their medications late, there were on average 3.1 occasions of taking it late. The most common reasons for this behavior included health care-related issues, followed by oversleeping, being away from home, work-related barriers, and forgetting. The majority of kidney transplant recipients took medications later than prescribed during 1 month. Future research should determine the clinical impact on graft function of late administration of immunosuppression. Interventions should be designed to better assist kidney recipients with taking medications on time, especially when they are away from home.

Thirty-year follow-up of chemo/hormonal therapy in node-positive breast cancer.

Results of a thirty-year follow-up of a clinical trial of chemo-hormonal therapy are reported. Eligible patients had recently diagnosed operable breast cancer, positive lymph nodes, no previous history of cancer, age less than 76 years, and no evidence of metastatic disease. A total of 311 patients were stratified by estrogen receptor (ER) status and number of axillary nodes involved with tumor. After stratification, patients were randomly assigned to one of three treatment regimens: cyclophosphamide, methotrexate and 5-fluorouracil (CMF) for 1 year; CMF chemotherapy combined with anti-estrogen therapy (tamoxifen) for 1 year; or CMF plus tamoxifen with BCG during the second year. The endpoint of the trial was a first recurrence. Factors measured at diagnosis and used in the analyses were age, body mass index, ER status, menopausal status, number of positive nodes, tumor diameter, Charlson comorbidity index, socioeconomic status, and race. Causes of death and incidence of other cancer primaries were obtained from death certificates and medical records. Patients treated with tamoxifen had a marginally longer disease-free survival (hazard ratio (HR)=0.83, 95% CI identical with [0.66, 1.04]) and statistically significant longer overall survival (HR=0.77, 95% CI identical with [0.63, 0.96]) that decreased with time. Incidence of other primary cancers and causes of death were similar for the two treatment groups. The addition of 1 year of tamoxifen to CMF therapy provides an early disease-free and overall survival advantage; however long-term effects are negligible. Similarly, the survival advantage of patients diagnosed with ER+ tumors persists for the first two decades after diagnosis.

Access and equity to cancer care in the USA: a review and assessment.

Cancer represents a serious threat to the health of women and men living in the USA. As the second leading cause of death, it claims about 500,000 lives annually. Health disparities occur when there are differences in the incidence, prevalence, mortality, and burden of disease among specific sub-populations within a specified region. For decades, disparities have been reported among Americans from racial/ethnic minority groups and those from low income groups. African Americans, the largest racial minority group in the USA, have the highest cancer incidence and mortality rates in the USA; it is about 10% higher in African Americans than in white people. Inequities in insurance status among Americans adversely affect their ability to obtain the entire range of cancer care. Those who are members of ethnic minorities and the working poor are especially apt to have poorer access to care and reduced quality of cancer care services as a result.

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.

Self-assessed global quality of life: a comparison between African-American and white older patients with arthritis.

Quality of life (QOL) perceptions influence patient decisions and preferences for care and, more importantly, physicians may render recommendations based on their impressions of the patient's QOL. QOL is perceived differently by different ethnic groups. This may have implications for understanding ethnic disparities in medical procedure utilization such as joint replacement for osteoarthritis. In a study of 596 elderly male patients with moderate to severe symptomatic knee/hip osteoarthritis, we examined how African-American and white patients rate their overall QOL. We adjusted their responses for important demographic, clinical, and psychosocial potential confounders. African-American (44%) and white (56%) patients in this study were comparable, except that African-Americans reported lower socioeconomic status compared with whites. After adjusting for all other study covariates, African-American ethnicity (B= -0.121, P = 0.004) was negatively correlated with overall QOL ratings. How ethnic variations in perceptions of QOL impact observed ethnic disparity in the utilization of joint replacement therapy needs further investigation.

Variation in perceptions of treatment and self-care practices in elderly with osteoarthritis: a comparison between African American and white patients.

OBJECTIVE: To compare elderly African American and white patients with osteoarthritis of the knee or hip with respect to their perceptions of the efficacy of traditional and complementary treatments and their self-care practices. METHODS: An observational, cross-sectional study design using structured questionnaires was employed. RESULTS: The sample consisted of 593 patients (44% African American and 56% white). The 2 groups were comparable with respect to age, disease severity or functional status, and comorbidities. African Americans were more likely than whites to report lower educational level and household income. African Americans were also more likely than whites to perceive various traditional and complementary care modalities as efficacious. However, they were less likely than whites to perceive joint replacement therapy as efficacious (odds ratio 0.52, 95% confidence interval 0.28-0.98). African American patients were more likely than white patients to rely on self-care measures for their arthritis. CONCLUSION: African American and white patients with osteoarthritis of the knee or hip differ with respect to their perceptions of traditional and complementary treatments for arthritis and their self-care practices.

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.

Computer program to assist in making decisions about adjuvant therapy for women with early breast cancer.

PURPOSE: The goal of the computer program Adjuvant! is to allow health professionals and their patients with early breast cancer to make more informed decisions about adjuvant therapy. METHODS: Actuarial analysis was used to project outcomes of patients with and without adjuvant therapy based on estimates of prognosis largely derived from Surveillance, Epidemiology, and End-Results data and estimates of the efficacy of adjuvant therapy based on the 1998 overviews of randomized trials of adjuvant therapy. These estimates can be refined using the Prognostic Factor Impact Calculator, which uses a Bayesian method to make adjustments based on relative risks conferred and prevalence of positive test results. RESULTS: From the entries of patient information (age, menopausal status, comorbidity estimate) and tumor staging and characteristics (tumor size, number of positive axillary nodes, estrogen receptor status), baseline prognostic estimates are made. Estimates for the efficacy of endocrine therapy (5 years of tamoxifen) and of polychemotherapy (cyclophosphamide/methotrexate/fluorouracil-like regimens, or anthracycline-based therapy, or therapy based on both an anthracycline and a taxane) can then be used to project outcomes presented in both numerical and graphical formats. Outcomes for overall survival and disease-free survival and the improvement seen in clinical trials, are reasonably modeled by Adjuvant!, although an ideal validation for all patient subsets with all treatment options is not possible. Additional speculative estimates of years of remaining life expectancy and long-term survival curves can also be produced. Help files supply general information about breast cancer. The program's Internet links supply national treatment guidelines, cooperative group trial options, and other related information. CONCLUSION: The computer program Adjuvant! can play practical and educational roles in clinical settings.

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.

Referral of breast cancer patients to medical oncologists after initial surgical management.

BACKGROUND: Decisions to refer patients to other physicians for care or consultation are an important component of the provision of appropriate care for cancer patients. However, little is known about the referral process between specialists. OBJECTIVES: To examine the referral patterns of specialists to specialists and to understand why only some breast cancer patients receive a consultation with a medical oncologist. RESEARCH DESIGN: This study was conducted in a large metropolitan region from 1993 to 1995 using a 2-staged population-based sampling strategy. One hundred seven physicians discussed 244 patient cases and their own knowledge, attitudes, and practices toward treatment and referral. RESULTS: Of the 244 patients, 87.7% were referred to an oncologist, and 10.2% were actually prescribed tamoxifen by their surgeons before they saw the oncologist. Surgeons who were less involved in making decisions about the type of adjuvant therapy the patients were to receive and who preferred the use of chemotherapy were significantly more likely to refer patients to oncologists. Patients who were older, unemployed, node negative, and had a better prognosis or preferred not to see an oncologist were significantly less likely to be referred. These 7 factors explained a total of 55% of the variation in surgeons' decisions to refer patients to an oncologist. CONCLUSIONS: Extramedical factors, such as surgeon and patient preferences and communication factors, play a strong role in the referral process. In this sample, most patients were referred to an oncologist. However, older, unemployed patients and patients whose medical features indicated a better long-term prognosis were most likely to be among the nonreferred group.

Observations of withdrawal of life-sustaining treatment from patients who became non-heart-beating organ donors.

OBJECTIVE: Non-heart-beating organ donation for transplantation is increasing despite the concern whether all the donors are dead. This concern is based on the adequacy of documentation of death and the appropriate duration that circulation and respiration should be absent before death certification. No studies have examined the documentation and deaths of patients who became non-heart-beating organ donors. DESIGN: Retrospective study of observational data. PATIENTS: All non-brain-dead patients who became non-heart-beating organ donors at the University of Pittsburgh Medical Center from January 1, 1993, to June 30, 1998, were identified. Records for 15 of 16 patients were available for review. MEASUREMENTS AND MAIN RESULTS: Adequacy of documentation, extubation time, onset of severe hypotension, duration of absent circulation before death was certified, and the time of incision for organ procurement were ascertained. Twelve of 15 records had all required clinical documentation. The mean age of patients was 46.5 +/- 5.7 yrs. All 15 patients were extubated before death and had femoral arterial catheters; one had a biventricular assist device discontinued. The time of hypotension and pulselessness was not documented for one and three patients, respectively. All 12 patients with documentation had > or =2 mins of absent circulation. Time from certification to incision for procurement was 1.1 +/- 2.3 mins. CONCLUSIONS: In a small study of non-heart-beating organ donation, circulation never resumed after >1 min of absent circulation, suggesting that 2 mins of absent circulation is sufficient to certify death. Three of 15 patients had inadequate documentation. Gaps and inconsistencies in documentation may raise concern about the potential for abuse.