Preferred Role In Decision Research Articles

Advance care planning: A qualitative investigation on patients’ perspectives with advanced heart failure

The Hospice and Palliative Care Act (2015) promotes advance care planning (ACP) for patients in nursing homes, but chronically ill patients living at home can also benefit from ACP. The aim of the study was to analyze the perception of ACP consultations by patients with advanced heart failure. Patients (70years and older) with advanced heart failure participated in two physician-led ACP consultations. Afterwards, two evaluative interviews were conducted with each participant. All consultations and interviews were analyzed by grounded theory considering the coding paradigm. Finally, an empirical grounded typology was conducted. A total of 30patients participated in at least 1ACP consultation, whereas 18persons completed an interview. Successful ACP consultations depend not only on the discussion but also on the patient's requirements: willingness to discuss ACP, their illness, death and dying, and the experienced and preferred role in healthcare decision-making. From the patient's viewpoint ACP consultation can result in an advance directive, but an informed rejection of ACP or the creation of new assumptions for the future are also possible outcomes. The ACP discussions should to be aligned to patients' preferences in terms of communication and content. It is important to accept arejection of dealing with ACP or conducting an advance directive. The patients' view needs to be integrated into future research.

Exploring provider-surrogate communication during POLST discussions for individuals with advanced dementia

ABSTRACTObjectives: This qualitative descriptive study explored provider-surrogate communication during Physician Orders for Life-Sustaining Treatment (POLST) discussions for patients with advanced dementia.Methods: Data from participant observations and audio-recordings of ten POLST discussions were analyzed using directed content analysis within the context of an existing conceptual model of Communication and Surrogate Decision Making.Results: Surrogates primarily focused on making sense of the clinical information about life-sustaining treatments during POLST conversations. Providers delivered clinical information about the trajectory of dementia, life-sustaining treatments, and/or features of POLST. They also demonstrated emotional support, by valuing what the surrogate said, acknowledging the surrogate's emotions, listening carefully, understanding the patient as a person, and eliciting questions. However, providers rarely conveyed comprehensive information about the patient's current condition and end-of-life treatment options. Also, open communication of expectations and preferred decision-making roles was rarely observed during the discussions.Conclusion: Findings highlight areas that require providers’ attention to conduct effective communication, such as delivering comprehensive information about life-sustaining treatments including discussion of risks and benefits in the context of dementia. Findings also support the use of the conceptual model as a framework to examine provider-surrogate communication in the context of POLST discussions, advanced dementia, and non-hospital settings. Additional research is necessary to confirm these findings in larger, more diverse groups of patients, surrogates, and providers.

The impact of caregiver's role preference on decisional conflicts and psychiatric distresses in decision making to help caregiver's disclosure of terminal disease status.

The objective of this study was to investigate the impact of caregivers' role preference in decision making on conflicts and psychiatric distresses. The responses of 406 caregivers of terminal cancer patients enrolled in a trial determining the efficacy of a decision aid focused on the disclosure of terminal disease status were included in this secondary analysis. The outcomes include the change scores of the Decision Conflict Scale (DCS) and depression and anxiety subscales of the Hospital Anxiety and Depression Scale (HADS) at the 1 and 3 months from baseline. The linear mixed model was employed to discover the impact of caregivers' decisional role preference on the outcomes. Of the 406, 137 (33.7%) showed an active role preference and 269 (66.3%) showed a passive role preference. In the post hoc analysis of the adjusted differences of change scores between passive caregivers who received decision aid (passive-decision aid) and active caregivers with decision aid (active-decision aid), non-significant differences were observed in the DCS. However, at the 3-month, the change scores of the HADS depression subscale increased by 4.43 (effect size, 0.71) and those of the HADS anxiety subscale increased by 4.14 (effect size, 0.61) in the passive-decision aid group than in active-decision aid group, showing moderate to large difference. These findings suggest that information might be ethically recommended in a format that is interactive and tailored to how much an individual wishes to be involved in the decision-making process.

"We just follow the patients' lead": Healthcare professional perspectives on the involvement of teenagers with cancer in decision making.

We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate healthcare professionals' (HCP) views of teenagers' involvement in decisions about their care and treatment for leukaemia. We conducted participant observation at 98 multi-disciplinary meetings and 95 open-ended, semi-structured interviews and informal conversations with clinical teenage cancer teams at one UK tertiary referral centre. Data were collected over a 9-month period, audio-recorded, transcribed verbatim and analysed using principles of grounded theory. HCP revealed principles relating to the involvement of teenagers with leukaemia in decision making: (1) do the 'right thing', (2) act on the care and treatment preferences of the teenager and (3) openly disclose information about the teenagers' condition. These principles were prioritised and utilised uniquely in each situation, reliant on three mediating factors: (1) family communication styles, (2) stage of illness and (3) nature of the disease. Specialist haematology teams are aware of the individual, and shifting and situational preferences of teenagers. They follow the lead which teenagers give them with regard to these preferences. If actual practice with regard to the involvement of teenagers is found to be wanting, this study refutes that this should be ascribed to insensitivity on the part of HCP about teenagers informational and decisional role preferences.

Impact of Patients' Expressed Wishes on Their Surrogate Decision Makers' Preferred Decision-Making Roles in Japan.

Home medical care (HMC) patients and their families are expected to prepare for end-of-life decision making. We investigated the decision readiness of HMC patients and their family surrogates. Cross-sectional survey. We collected data from dyads, consisting of a HMC patient aged 65 years or older and a family member of the patient, recruited at four Japanese primary care clinics from January 2016 to November 2016. Surrogates completed a questionnaire on their sociodemographic and health status and their decision readiness. Primary HMC physicians provided information on their patients. A total of 337 dyads were screened, and 159 were included. The mean age of patients and surrogates was 86 and 64 years, respectively, and 29% of patients were cognitively impaired. Only 1.9% of the patients left written advance directives, and 32% were entrusting all decision making to the doctor or their families. Regarding the surrogate's preferred decision-making role, 21.9% of the surrogates preferred doctors to assume decision-making responsibility. A multivariate analysis revealed that no discussion of care goals (odds ratio [OR] 2.88, 95% confidence interval [CI] 1.02-8.17) and patients having expressed their wishes verbally, including entrusting decision making to others (OR 2.51, 95% CI 1.07-5.89), were associated with surrogates' preference for doctors to have decision-making responsibility. Many patients preferred to entrust the end-of-life decisions to others rather than utilizing advance directives, which made surrogates more dependent on doctors for decision making. Qualified advance care planning is required to promote familial discussion and surrogates' decision readiness.

Preferences and actual chemotherapy decision-making in the greater plains collaborative breast cancer study

Introduction: There is renewed interest in identifying breast cancer patients’ participation in decision-making about adjuvant chemotherapy. There is a gap in the literature regarding the impact of these decisions on quality of life (QOL) and quality of care (QOC). Our aims were to determine similarities and differences in how patients diagnosed with breast cancer preferred to make decisions with providers about cancer treatment, to examine the patient’s recall of her role when the decision was made about chemotherapy and to determine how preferred and actual roles, as well as congruence between them, relate to QOL and perceived QOC.Material and methods: Greater Plains Collaborative clinical data research network of PCORnet conducted the ‘Share Thoughts on Breast Cancer’ survey among women 12–18 months post-diagnosis at eight sites in seven Midwestern United States. Patients recalled their preferred and actual treatment decision-making roles and three new shared decision-making (SDM) variables were created. Patients completed QOL and QOC measurements. Correlations and t-tests were used.Results: Of 1235 returned surveys, 873 (full sample) and 329 (subsample who received chemotherapy) were used. About one-half of women in both the full (50.7%) and subsample (49.8%,) preferred SDM with providers about treatment decisions, but only 41.2% (full) and 42.6% (subsample) reported experiencing SDM. Significant differences were found between preferred versus actual roles in the full (p < .001) and subsample (p < .004). In the full sample, there were no relationships between five decision-making variables with QOL, but there was an association with QOC. The subsample’s decision-making variables related to several QOL scales and QOC items, with a more patient-centered decision than originally preferred related to higher physical and social/family well-being, overall QOL and QOC.Conclusions: Patients benefit from providers’ efforts to identify patient preferences, encourage an active role in SDM, and tailor decision making to their desired choice.

Regret about surgical decisions among early-stage breast cancer patients: Effects of the congruence between patients' preferred and actual decision-making roles.

Early-stage breast cancer patients generally receive either a mastectomy or a lumpectomy, either by their own choice or that of their surgeon. Sometimes, there is regret about the decision afterward. To better understand regret about surgical decisions, this study examined 2 possibilities: The first is that women who take a dominant or collaborative role in decision making about the surgery express less regret afterward. The second is that congruence between preferred role and actual role predicts less regret. We also explored whether disease stage moderates the relationship between role congruence and decisional regret. In a cross-sectional design, 154 women diagnosed with breast cancer completed a survey assessing decisional role preference and actual decisional role, a measure of post-decision regret, and a measure of disturbances related to breast cancer treatment. Hierarchical regression was used to investigate prediction of decisional regret. Role congruence, not actual decisional role, was significantly associated with less decisional regret, independent of all the control variables. The interaction between disease stage and role congruence was also significant, showing that mismatch relates to regret only in women with more advanced disease. Our findings suggest that cancer patients could benefit from tailored decision support concerning their decisional role preferences in the complex scenario of medical and personal factors during the surgical decision.

The impact of caregiver’s role preference on decisional conflicts and psychiatric distresses in decision making to help caregiver’s disclosure of terminal disease status.

10106 Background: A decision aid (DA) increases knowledge, decreases decisional conflicts and regrets and improves post-decision satisfaction, emotional distress. However, few DA trials have revealed whether decisional role preferences have an impact on patient-reported outcomes by decision making. The objective of this study was to investigate the impact of caregiver’s decisional role preference on decisional conflicts and psychiatric distresses in decision making. Methods: 406 of 444 caregivers of terminally ill cancer patients enrolled onto a previous trial determining the efficacy of the decision aid about disclosure of terminal disease status were included in this analysis. The analysis outcomes were change score of decisional conflicts using the Decision Conflict Scale (DCS) and depression and anxiety using the Hospital Anxiety and Depression Scale (HADS) at 1 and 3 months from baseline. Participants were divided into 4 groups: active caregiver who received DA (active-DA), active caregiver in control group (active-control), passive caregiver who received DA (passive-DA), and passive caregiver in control group (passive-control). Linear mixed model was conducted to find out the impact of caregiver’s decisional role preference on the DCS and the HADS. Results: Among 406 caregivers, 137 (33.7%) showed active role preference, and 269 (66.3%) showed passive role preference. In post-hoc analysis of adjusted differences of change scores between passive-DA and active-DA groups, non-significant differences were observed in DCS. However, at 3 months, change scores of HADS depression subscale increased as 4.43 (95% confidence interval (CI), 0.78-8.07; P&lt; 0.007; effect size (ES) 0.71) and those of HADS anxiety subscales increased as 4.14 (95% CI, 0.37-7.91; P= 0.021; ES 0.61) in passive-DA group than in active-DA group, showing moderate to large difference. Conclusions: These findings suggest that information about decision making might be provided with tailored format for how much individual wish to involve in decision making.

The state of shared decision making in Malaysia

Shared decision making (SDM) activities in Malaysia began around 2010. Although the concept is not widespread, there are opportunities to implement SDM in both the public and private healthcare sectors. Malaysia has a multicultural society and cultural components (such as language differences, medical paternalism, strong family involvement, religious beliefs and complementary medicine) influence medical decision making. In terms of policy, the Ministry of Health has increasingly mentioned patient-centered care as a component of healthcare delivery while the Malaysian Medical Council's guidelines on doctors’ duties mentioned collaborative partnerships as a goal of doctor-patient relationships. Current research on SDM comprises baseline surveys of decisional role preferences, development and implementation of locally developed patient decision aids, and conducting of SDM training workshops. Most of this research is carried out by public research universities. In summary, the current state of SDM in Malaysia is still at its infancy. However, there are increasing recognition and efforts from the academic institutions and Ministry of Health to conduct research in SDM, develop patient decision support tools and initiate national discussion on patient involvement in decision making.

Psychiatric Genomic Dilemmas In Adolescence

Advances in genetics, data analysis technologies, and the practice of precision medicine are slowly entering the field of psychiatry and raise hopes for better diagnosis, prevention, and treatment of psychiatric disorders. As genetic testing for predispositions to and diagnosis of psychiatric disorders is developed, children may be a particular target group. Studies indicate that parents desire to learn all about their children’s genetic make-up–primarily out of a sense of responsibility to care for their children but also due to curiosity–and that testing laboratories and pharmaceutical companies are already invested in marketing their products in this area. Use of genetic tests in children may be motivated further by the fact that many psychiatric conditions begin in childhood and adolescence, although the social, healthcare, and income costs associated with psychiatric disorders endure well beyond childhood.However, the prospect of psychiatric genetic testing of children, especially asymptomatic children in research settings, and return of secondary genomic findings to them and their families raise unique dilemmas. How should we balance parents’ informational interests and children’s right (not) to know? What should the response be to genetic results indicating predispositions to psychiatric conditions (e.g., schizophrenia, substance use disorders)? Should the answers to these questions turn on the availability of effective preventive measures? And who should decide?These challenges are exacerbated for adolescents (ages >13), who are legal minors but whose decision making capacity can often resemble that of adults. The unique characteristics of adolescence further pull the discussion in two conflicting directions. On the one hand, adolescents are engaged in a search for individual identity, in planning for the future, and in individuating from their families, which suggest the value of granting them greater control over decisions regarding genetic testing. On the other hand, adolescents often manifest greater impulsivity and tendencies to engage in risky behaviors and to be influenced by peer pressure, which suggest that their decision-making capacity may be compromised. This may have particular implications for psychiatry: studies suggest that the majority of teens with substance abuse issues began using drugs or alcohol as a result of peer pressure, and that the use of such substances increases the risk for other psychiatric conditions (e.g., schizophrenia). Whether adolescents would resist such pressures in light of psychiatric genetic testing results is unknown, but important to explore.This presentation will review existing studies relating to the psychiatric genetic testing of adolescents and consider the ethical and social challenges that arise, in particular: adolescents’ preferred decision-making roles; types of primary and secondary genomic findings to be returned; impact of psychiatric genetic knowledge on the adoption of prevention measures; and genomic privacy among family members. In addition, suggestions for future research will be considered.

Longitudinal Assessment of Distress among Veterans with Incidental Pulmonary Nodules.

Millions of patients are diagnosed with pulmonary nodules every year. Increased distress may be a common harm, but methods of mitigating this distress are unclear. We aimed to determine whether high-quality communication regarding the discovery of a pulmonary nodule is associated with a lower level of patient distress. We conducted a prospective, repeated-measures cohort study of 121 patients with newly reported, incidentally detected pulmonary nodules. The primary exposure was participant-reported quality of communication regarding the nodule. Secondary exposures included communication measures regarding participants' values, preferences, and decision making. The main outcome was nodule-related distress measured using the Impact of Event Scale. We used adjusted generalized estimating equations to measure the association between nodule communication quality and at least mild distress. Most participants (57%) reported at least mild distress at least once. While average distress scores decreased over time, one-fourth still had elevated distress after 2 years of surveillance for a nodule. The average calculated risk of cancer at baseline was 10% (SD, 13%), but 52.4% believed they had a greater than 30% risk of lung cancer at baseline, and this percentage remained fairly constant at all visits. High-quality nodule communication was associated with decreased odds of distress (adjusted odds ratio, 0.42; 95% confidence interval, 0.24-0.73). Lower-quality communication processes regarding participants' values and preferences were also associated with increased odds of distress, but concordance between the actual and preferred decision-making roles was not. Among patients with incidentally discovered pulmonary nodules, distress is common and persistent for about 25%. Many participants substantially overestimate their risk of lung cancer. Incorporating patients' values and preferences into communication about a pulmonary nodule and its evaluation may mitigate distress.

Patient-Reported Roles, Preferences, and Expectations Regarding Treatment of Stage I Rectal Cancer in the Cancer Care Outcomes Research and Surveillance Consortium.

Historically, stage I rectal cancer was treated with total mesorectal excision. However, there has been growing use of local excision, with and without adjuvant therapy, to treat these early rectal cancers. Little is known about how patients and providers choose among the various treatment approaches. The purpose of this study was to identify patient roles, preferences, and expectations as they relate to treatment decision making for patients with stage I rectal cancer. This is a population-based study. The study included a geographically diverse population and health-system-based cohort. A total of 154 adults with newly diagnosed and surgically treated stage I rectal cancer between 2003 and 2005 were included. We compared patients by surgical treatment groups, including total mesorectal excision and local excision. Clinical, sociodemographic, and health-system factors were assessed for association with patient decision-making preferences and expectations. A total of 80% of patients who underwent total mesorectal excision versus 63% of patients who underwent local excision expected that surgery would be curative (p = 0.04). The total mesorectal excision group was less likely to report that radiation would cure their cancer compared with the local excision group (27% vs 63%; p = 0.004). When asked about their preferred role in decision making, 28% of patients who underwent total mesorectal excision preferred patient-controlled decision making compared with 48% of patients who underwent local excision (p = 0.046). However, with regard to the treatment actually received, 38% of the total mesorectal excision group reported making their own surgical decision compared with 25% of the local excision group (p = 0.18). The study was limited by its sample size. The preferred decision-making role for patients did not match the actual decision-making process. Future efforts should focus on bridging the gap between the decision-making process and patient preferences regarding various treatment approaches. This will be particularly important as newer innovative procedures play a more prominent role in the rectal cancer treatment paradigm.

Parental Decision-Making Preferences in Neonatal Intensive Care

To explore how characteristics of medical decisions influence parents' preferences for control over decisions for their seriously ill infants. In qualitative interviews, parents of infants in the neonatal intensive care unit (NICU) were asked to consider all medical decisions they could recall, and were prompted with decisions commonly encountered in the NICU. For each decision, parents were asked detailed questions about who made each decision, whom they would have preferred to make the decision, and why. Using standard qualitative methods, responses were coded and organized such that decision-level characteristics could be analyzed according to preferred decision-making role. Parents identified 2 factors that were associated with a preference to delegate decisions to the medical team (high degree of urgency, high level of required medical expertise) and 4 factors associated with a preference to retain parental control (high perceived risk, high personal experience with the decision, involvement of foreign bodily fluids, and similarity to decisions that they perceived as part of the normal parental role). Characteristics of decisions influence preferences for control over medical decisions among parents of patients in the NICU. These insights may guide improvements in physician-parent communication and consent.

Subjective and objective knowledge and decisional role preferences in cerebrovascular patients compared to controls.

BackgroundRisk knowledge and active role preferences are important for patient involvement in treatment decision-making and adherence. Although knowledge about stroke warning signs and risk factors has received considerable attention, objective knowledge on secondary prevention and further self-esteem subjective knowledge have rarely been studied. The aim of our study was to investigate knowledge and treatment decisional role preferences in cerebrovascular patients compared to controls.MethodsWe performed a survey on subjective and objective stroke risk knowledge and autonomy preferences in cerebrovascular patients from our stroke outpatient clinic (n=262) and from pedestrians on the street taken as controls during a “World Stroke Day” (n=274). The questionnaire includes measures for knowledge and decisional role preferences from previously published questionnaires and newly developed measures, for example, subjective knowledge, revealed on a visual analog scale.ResultsThe overall stroke knowledge was low to moderate, with no differences between patients and controls. Knowledge about secondary prevention was particularly low. Only 10%–15% of participants correctly estimated the stroke absolute risk reduction potential of aspirin. The medical data interpretation competence was moderate in both groups. Age and basic mathematical and statistical understanding (numeracy) were the only independent predictors of objective stroke knowledge, whereas previous stroke had no impact on stroke knowledge. However, patients were thought to be better informed than controls. Approximately 60% of both patients and controls claimed to prefer a shared decision-making approach in treatment decisions.ConclusionThe level of stroke risk knowledge in patients with cerebrovascular diseases was as low as in randomly selected pedestrians, although patients felt better informed. Both groups preferred involvement in treatment decision-making. We conclude that educational concepts for increasing awareness of knowledge gaps as well as for stroke risk and for prevention strategies are needed.

Prostate cancer survivors with a passive role preference in treatment decision-making are less satisfied with information received: Results from the PROFILES registry

ObjectiveTo investigate decision-making role preferences and their association with the evaluation of information received in a sample of low-risk and intermediate-risk prostate cancer (Pca) survivors. MethodsCross-sectional study involved 562 men diagnosed with low-risk or intermediate-risk Pca (median time since diagnosis, 48mo), measuring preferred decision-making role (Control Preference Scale) and the evaluation of information received (EORTC QLQ-INFO25). Analyses were performed using analysis of variance, chi-square tests, and multivariable linear regression models. ResultsMen who preferred a passive role were older and less educated than other preference groups and more often selected a noninvasive treatment option (all with P<0.001). The passive role preference group reported having received less information, judged the received information as less helpful, and indicated lower overall satisfaction with information received (all with P<0.05). Role preference groups did not differ in their desire to receive more information. ConclusionCompared with nonpassive preference groups, the preference for a passive role in Pca treatment decision-making is associated with less satisfaction with the information received. Practice implicationsAssessment of role preferences and tailored information provision could improve satisfaction with information received and perhaps may ultimately lead to improved patient participation in treatment decision-making.

Perceived involvement and preferences in shared decision-making among patients with hypertension.

Shared decision-making (SDM) is an important component of patient-centred care. However, there is limited information on its implementation in Malaysia, particularly in chronic diseases such as hypertension. The objective of this study was to examine perceived involvement and role preferences of patients with hypertension in treatment decision-making. A cross-sectional survey was conducted among 210 patients with hypertension in a teaching hospital in Malaysia. The majority of respondents agreed that their doctor recognized that a decision needs to be made (89.5%) and informed them that different options are available (77.1%). However, respondents' perceived level of involvement in other aspects of treatment decision-making process was low, including in the selection of treatment and in reaching an agreement with their doctor on how to proceed with treatment. In terms of preferred decision-making roles, 51.4% of respondents preferred a collaborative role with their physicians, 44.8% preferred a passive role while only 1.9% preferred an active role. Age and educational level were found to be significantly related to patient preferences for involvement in SDM. Younger patients (<60 years) and those with higher educational level preferred SDM over passive decision-making (ρ < 0.01). Encouragement from health care providers was perceived as a major motivating factor for SDM among patients with hypertension, with 91% of respondents agreeing that this would motivate their participation in SDM. Preferences for involvement in decision-making among patients with hypertension are varied, and influenced by age and educational level. Physicians have a key role in encouraging patients to participate in SDM.

Patient involvement in decision-making: a cross-sectional study in a Malaysian primary care clinic

ObjectiveShared decision-making has been advocated as a useful model for patient management. In developing Asian countries such as Malaysia, there is a common belief that patients prefer a passive role...

Impact of Race and Education on Patients' Preferred Decision-Making Roles for Vascular Procedures and Perceptions of Treatment Success

Impact of Race and Education on Patients' Preferred Decision-Making Roles for Vascular Procedures and Perceptions of Treatment Success

Treatment decision after IVF implantation cycle failure: Chinese female patients’ preferred role in decision making and its effects on decisional regret and psychological well-being

istered questionnaire before (T0) and after (T1) the course, which contained Professional Quality of Life (ProQol) measuring CS, compassion fatigue (CF), and other validated measures related to psychological wellbeing. RESULTS: Participants showed significant improvement in CS after attending the course (Pre-course: 33.94 + 4.4; Post-course: 36.35 + 3.82, t1⁄4-3.29, p<0.001). There was no significant change in the subscales of Burnout and Secondary Trauma. Moreover, healthcare practitioners who were younger in age, worked longer in medical field (t1⁄4-5.196, p<0.035) but shorter in ART setting (t1⁄4-3.042,p<0.014) showed greater difference. In addition, those who were with lower educational level (t1⁄43.45,p<0.014) and had religious belief (t1⁄4-7.071,p<0.002) also showed significant improvement in CS. CONCLUSIONS: The professional quality of life among healthcare practitioners comprises of both CS and CF. Although no significant change was found in CF, the program could still enhance CS among healthcare practitioners in ART setting. Regarding CF being the emphasis of many researches, enhancing CS involved in caring thus provides a positive aspect in cultivating job satisfaction and positive feelings in healthcare profession. Apart from preventing burnout, it can shed light on how to enhance the quality of human services in the field of ART. Therefore, CS should be taken into consideration in professional training on infertility counseling.

Decision-Making Consensus in the NICU: What Does Parent-Clinician Collaboration Actually Look Like? (FR416-B)

•Describe parent-clinician decision-making in the NICU.•Describe factors associated with parent-clinician consensus about decisions for critically ill infants. We know little about how parents and clinicians collaborate to make decisions for critically ill infants in the neonatal intensive care unit (NICU). Existing data are retrospective or hypothetical, emphasizing clinicians’ over parents’ perspectives. These studies suggest parents and neonatologists leave conversations with different perceptions about which decisions were discussed. To observe and analyze parent-clinician decision making in the NICU. A mixed-methods study at an urban academic medical center. We audiotaped family conferences about life-sustaining therapies and/or “difficult news.” Families, physicians, and nurses completed surveys about meeting content. Transcripts were analyzed using the Informed Decision-Making Tool (IDMT) and qualitative analysis using a priori coding techniques. We audiotaped 19 conversations between 31 family members and 37 clinicians. In 58% of conversations, the primary clinician was meeting the family for the first time. When asked about their preferred decision-making role, 8/31 parents wanted to make decisions after clinician recommendations, 15/31 wanted to partner equally with clinicians, and 8/31 wanted clinicians to make decisions after hearing parent’s opinions. Physicians correctly judged parents’ desired decision-making role 20% of the time, typically overestimating their desired independence. Nurses were correct 57% of the time. Parent-clinician consensus about which decisions were discussed existed after 8/19 conversations; the remaining participants variably perceived that a decision was discussed and variably characterized the identified decisions. Conversations with consensus had higher IDMT scores and were more likely to be about end-of-life care. Clinicians often overestimate parents’ desire to assume primary responsibility for decision making in the NICU. Decision-making clarity seems greatest when it involves forgoing therapies.