End Of Life Conversations Research Articles

Factors Associated With In-Hospital Death Among ICU Patients Receiving Palliative Care Consultation (S738)

Background. The 2010 Institute of Medicine report on the future of nursing recommends nurses practice to the fullest possible extent, which includes participating in important healthcare conversations. However, many nurses feel ill-prepared to participate in end of life (EOL) conversations due to inadequate training or experience. Research Objectives. To address this problem, project Objectives included: empowering nurse participation in EOL education, building confidence in ability to participate in EOL conversations, and exploring moral distress related to EOL transition. Method. To achieve these Objectives, an interdisciplinary educational forum was piloted using case analysis and panel discussion to engage the audience. Panelists included a physician from palliative care services, an oncology nurse-educator, and a nurse-educator with a specialty in medical ethics. Pre-event survey instruments to measure nurse confidence and frequency of participation in EOL discussions were distributed and collected 1 month preceding the forum. Post-event surveys were distributed and collected 1 month later. Permission was granted to publically share comments. Result. Sixty healthcare professionals attended the educational forum; 24 were nurses from inpatient and outpatient settings at one institution. Eighteen nurses submitted both preand postevent surveys; a 75% response rate. Paired comparisons of preand post-event surveys indicate a modest increase in nurse participation in interdisciplinary family meetings by self-report (pre-post difference, p < 0.05) and a positive trend indicating improved nurse confidence in ability to continue these conversations. Comments indicate a desire and need for similar team-focused discussions to encourage candid dialogue among all interdisciplinary healthcare providers involved in the EOL care transition. Conclusion. This pilot educational forum on EOL discussions laid a positive foundation for future educational projects. Implications for Research, Policy, or Practice. Preparing nurses to participate in EOL discussions with interdisciplinary colleagues provides empowerment to practice and participate in these conversations. Ongoing professional education related to EOL discussions is necessary to improve the quality of patientand family-centered care. Factors Associated With In-Hospital Death Among ICU Patients Receiving Palliative Care Consultation (S738) Ayano Kiyota, MD, University of Hawaii JABSOM, Honolulu, HI. Christina Bell University of Hawaii JABSOM, Honolulu, HI. Kamal Masaki, MD, University of Hawaii, Honolulu, HI. Daniel Fischberg, MD PhD, University of Hawaii JABSOM, Honolulu, HI. (All authors listed above had no relevant financial relationships to disclose.)

Abstract B17: Physician techniques in shaping prognostic conversations: Implications for black women.

Abstract Background: Physician attitudes and adeptness at initiating end-of-life (EoL) conversations has been shown to be one of the greatest predictors of when patients with advanced metastatic cancer will make the transition from active treatment to EoL care. In the Medical Outcomes Study, minority patients rated their physicians decision-making styles lower than their white counterparts. Weeks (1998) writes that many cancer patients have an inadequate understanding of prognosis, and their overestimation of survival may greatly influence their treatment decisions. It is this discrepancy between what the patient assumes will happen and what the physician knows to expect based on medical expertise that is dependent on the patient-physician relationship. How prepared both patient and physician are for the various outcomes is based in their working relationship. Given these disparities, it is important to understand providers' experiences in conducting EoL conversations, and the particular barriers they perceive in communicating information to help patients make EoL decisions. Methods: Semi-structured, in-depth interviews were conducted with 15 oncologists at a major academic research hospital. Physicians were asked about the patient-physician relationship and EoL decision making in patients with advanced cancer. Data was transcribed and analyzed using Atlas.ti in the grounded theory tradition. Findings: Physicians reported that they view their role as being an adviser or an educator to the patient. They therefore see this process of preparing a patient for what to expect during the disease and treatment trajectory, and alerting them to possible outcomes as essential parts of their role as oncologists. These conversations and the patient-physician relationship make up a social process known as Prognostication. This study identified three main types of prognostication: Quantitative, Categorical and Qualifying. All of these prognostic strategies can be further delineated into Death-Focused, Cure-Focused or Chronic-Disease-Focused Prognostication. Each of these sub-strategies can help frame and guide the process of prognosis. Physicians use their experience and intuition to determine the type of prognostication to use with their patients and what information to share in order to maintain a functioning therapeutic relationship and guide the patient through the disease and treatment trajectory. Discussion: Physicians' use of experience and intuition to shape prognostic conversations with patients has important potential implications for women of color. A growing body of literature has documented the use of stereotypes by physicians in clinical encounters with Black patients. Research by van Ryn and Burke (2000) demonstrates that physicians tend to view Black patients as less intelligent, educated, pleasant and rational, as well as less likely to be compliant and more likely to lack social support. These are all traits pointed to by physicians in the current study as essential to the patient-physician relationship and indicators for how much prognostic information a patient would want to receive. The brief time allotted for most clinical encounters means that physicians may rely heavily on race-based stereotypes in order to gain an understanding of how much prognostic information patients want and how they want it presented. Citation Format: Jennifer James. Physician techniques in shaping prognostic conversations: Implications for black women. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr B17.

An Exploratory Survey of End-of-Life Attitudes, Beliefs, and Experiences of Adolescents With HIV/AIDS and Their Families

ContextFor youths with life-limiting conditions, little is known regarding families' understanding of their adolescent's wishes for end-of-life (EOL) care. ObjectivesTo examine congruence in HIV positive adolescents and their families' thoughts about death and dying. MethodsThe Lyon Advance Care Planning Survey-Adolescent and Surrogate versions were administered within a randomized controlled trial. Participants (n=48) were medically stable adolescents aged 14–21 years with HIV/AIDS and their families. Congruence was measured by intraclass correlation coefficients (ICCs) for continuous variables and by kappa for ordinal or dichotomous responses. ResultsAdolescent participants were as follows: mean age 16.6 years (range 14–21); 37.5% males; 92% African American; 38% CD4 count <200; and viral load mean=32,079 copies/mL (range <400–91,863 copies/mL). Adolescent/family dyads agreed that it is important to complete an advance directive to let loved ones know their wishes (21/24 dyads), yet no dyads agreed an advance directive had been completed. Dyads endorsed incongruent thoughts about the adolescent being afraid of dying in pain (64%; congruent afraid=8 dyads, kappa=−0.0769) and being off life support machines (congruent important=9 dyads, ICC=−0.133, 95% confidence interval = −0.540, 0.302, P=0.721). Families' knowledge of teens' preferences for the timing of EOL conversations (early vs. late in course of illness) was poor (kappa=−0.1186). Adolescents (90%) wanted to talk about EOL issues before they entered the dying phase. ConclusionAlthough important areas of congruence emerged, equally important areas, such as the timing of these conversations and adolescents' EOL needs and wishes, are not known by their families. Families need help initiating conversations to assure that their adolescents' EOL wishes are known to them.

Supporting community engagement around end of life conversations & care, an asset- based approach

Healthcare systems and local hospices have extensive expertise and community connections around end of life awareness and care, however innovative and cost effective solutions are required to engage the wider...

Increasing all staff awareness and skills to promote the conversation: a multi-staff, regional education approach

As part of the National End of Life Strategy recommendations and the Northwest Evaluation of Dying Matters Week 2010, Greater Manchester Cheshire Cancer Network aimed to provide enhanced communication skills...

Cross purposes? Challenges of providing palliative care to frail older people in a community service

BackgroundProviding palliative care to frail older people in the last years of life is challenging. Increasingly this is becoming a focus of Community Matrons (CM) work. Effective communication between CMs...

Preventing the Lost-in-Translation Phenomenon: Piloting a Curriculum for Health Care Interpreters in End-of-Life Conversations (319-B)

1.Describe the need for professionally-trained interpreters in hospice and palliative care.2.Name two strategies to promote high-quality communication with patients with limited English proficiency.3.Identify current and future training opportunities for professional interpreters in palliative and end-of-life care. Although studies suggest that using professional healthcare interpreters improves care quality and satisfaction for patients with limited English proficiency (LEP), significant communication errors may still occur during crucial discussions between language-discordant patients and providers. One potential explanation for the observed high rates of communication errors may be that healthcare interpreters lack appropriate training in end-of-life discussions. Although interpreters have access to general training in healthcare interpretation, there are no standardized curricula or training programs for healthcare interpreters in palliative care. We developed an innovative training program, Interpreting in Palliative Care, to prepare healthcare interpreters for the linguistic, cultural, and personal challenges of interpreting for palliative and end-of-life (EOL) discussions. A group of palliative care physicians and interpreter trainers developed the curriculum by reviewing relevant literature and then performing a needs assessment of palliative care programs in California public hospitals, which serve a high percentage of LEP patients (average 36%). The core elements of the eight-hour in-person/online training program include: (a) a conceptual introduction to palliative care; (b) three videos of EOL interpreter-mediated encounters modeling best practices in palliative care interpreting; (c) an introduction to palliative care vocabulary terms and exercises enabling practice interpreting from English to seven other languages, and (d) exercises on managing the emotional impact of interpreting for EOL conversations. The curriculum was pilot tested in a group of 15 experienced interpreters. Pre- and posttesting of participants in the pilot group demonstrated that the curriculum was effective in improving interpreter understanding of palliative care and the specific techniques and vocabulary used to interpret these conversations. Preliminary data suggest that an innovative training program in palliative care interpreting can increase interpreters’ knowledge and understanding, specific to end-of-life interpreting. We will incorporate lessons learned from the pilot group to revise and disseminate the curriculum nationally.

Improving Residents' End-of-Life Communication Skills with a Short Retreat: A Randomized Controlled Trial

Internal medicine residents are largely unprepared to carry out end-of-life (EOL) conversations. There is evidence that these skills can be taught, but data from randomized controlled trials are lacking. We studied whether a day-long communication skills training retreat would lead to enhanced performance of and confidence with specific EOL conversations. We also studied the effect of the retreat on residents' ability to respond to patient emotions. PGY-2 resident volunteers were randomly assigned to a retreat group or a control group. The retreat involved a combination of teaching styles and skills practice with standardized patients. All participants completed questionnaires and were evaluated carrying out two types of conversations (breaking bad news or discussing direction of care) with a standardized patient before (T1) and after (T2) the intervention phase. Conversations were audio-taped and later rated by a researcher blinded to group assignment and time of assessment. Forty-nine residents agreed to randomization (88%) with 23 residents randomized to the retreat group and 26 to the control group. Compared to controls, retreat participants demonstrated higher T2 scores for breaking bad news, discussing direction of care, and responding to emotion. Comparing T2 to T1, the retreat group's improvement in responding to emotion was statistically significant. The retreat group's confidence improved significantly only for the breaking bad news construct. A short course for residents can significantly improve specific elements of resident EOL conversation performance, including the ability to respond to emotional cues.

“South Dakota's Dying to Know”: A Statewide Survey about End of Life

To develop a baseline understanding of attitudes, advance planning, knowledge, and preferences about end-of-life (EOL) care among community-dwelling South Dakotans. Surveys were sent to 10,204 randomly selected households in South Dakota in August 2005, resulting in a 24.8% return rate (N = 2533). Data were entered into the computer for subsequent univariate (frequencies) and bivariate (using chi(2)) analysis. Most respondents said preparation for EOL was very important, yet far fewer had actually taken steps to ensure their EOL wishes would be known or honored. Most people did not want artificial hydration/nutrition at EOL, preferred to die at home, and harbored misconceptions about pain; yet, most had not engaged in conversations with their physician, minister, or lawyer about these issues. While some adults were unfamiliar with hospice care, when provided with a definition, a majority indicated that they would want hospice care if they were dying and preferably in their own homes. Disparities between what South Dakotans want at EOL and what actions they have taken to address those preferences challenge individuals, families, and professionals to engage in conversation to redress this inconsistency. Receptivity to physician-initiated EOL conversations suggests this talk be included with all patients, not just those who are elderly or at EOL. Data from this statewide study of community-dwelling adults provide information to better understand EOL preferences and to inform health policy and practice.

Personalized end-of-life care: Associations between patient preferences and treatment intensity near death

6516 Background: Medical treatment at the end-of-life (EOL) should be responsive to patient values, but research shows it may instead reflect the regional supply of health services and/or physician practice patterns. We sought to determine whether patients' preferences are associated with EOL medical care and place of death. Methods: Coping with Cancer is an NCI/NIMH-funded, multi-site prospective, longitudinal cohort study of patients with advanced cancer, conducted from September 2002-February 2008. Analyses were based upon 317 deceased patients interviewed at baseline and followed until death, a median of 4.4 months later. EOL care was obtained from chart review, and regressed on patients' baseline preferences for life-extending therapy. Analyses were adjusted for significant confounds; i.e., socio-demographics, cancer type, patient denial, EOL discussion, do-not resuscitate (DNR) order, and treatment center. A sub-analysis examined EOL care within three different medical centers to determine whether patients' preferences and treatment intensity varied by region/practice type. Results: 90 of 317 patients (28.4%) reported a desire to receive life-extending therapy at baseline. Patients' preferences did not differ by proximity to death or performance status, but patients who preferred life-extending therapy had higher rates of denial (75.0% vs. 55.6%, p = 0.002) and were less likely to report having an EOL conversation (24.4% vs. 48.9%, p = 0.0002) or a DNR order (24.4% vs. 48.9%, p &lt; 0.0001). These patients were more likely to undergo ICU admission (AOR 4.6, 95% CI 1.9–11.1) and ventilation (AOR 3.0, 95% CI 1.2–7.3), and die in an ICU (AOR 6.7, 95% CI 2.4–18.7) instead of at home (AOR 0.6, 95% CI 0.3–0.9). A sub-analysis of patients treated at Yale, Parkland, and New Hampshire Oncology-Hematology confirmed that patients' preference for life-extending treatment was associated with higher rates of ICU admission in all three centers. Conclusions: Advanced cancer patients' treatment preferences may play a more important role in determining the intensity of medical care at the EOL than previously recognized. Future research should determine whether these preferences are informed and thus reflect patients' true values for EOL care. No significant financial relationships to disclose.

Health Care Costs in the Last Week of Life

Life-sustaining medical care of patients with advanced cancer at the end of life (EOL) is costly. Patient-physician discussions about EOL wishes are associated with lower rates of intensive interventions. Funded by the National Institute of Mental Health and the National Cancer Institute, Coping With Cancer is a longitudinal multi-institutional study of 627 patients with advanced cancer. Patients were interviewed at baseline and were followed up through death. Costs for intensive care unit and hospital stays, hospice care, and life-sustaining procedures (eg, mechanical ventilator use and resuscitation) received in the last week of life were aggregated. Generalized linear models were applied to test for cost differences in EOL care. Propensity score matching was used to reduce selection biases. Of 603 participants, 188 (31.2%) reported EOL discussions at baseline. After propensity score matching, the remaining 415 patients did not differ in sociodemographic characteristics, recruitment sites, illness acknowledgment, or treatment preferences. Further analyses, adjusted by quintiles of propensity scores and significant confounders, revealed that the mean (SE) aggregate costs of care (in 2008 US dollars) were $1876 ($177) for patients who reported EOL discussions compared with $2917 ($285) for patients who did not, a cost difference of $1041 (35.7% lower among patients who reported EOL discussions) (P =.002). Patients with higher costs had worse quality of death in their final week (Pearson production moment correlation partial r = -0.17, P =.006). Patients with advanced cancer who reported having EOL conversations with physicians had significantly lower health care costs in their final week of life. Higher costs were associated with worse quality of death.

Nebraska Veterans' Preferences for End-of-Life Care

More than 1,800 veterans die in a variety of healthcare settings each day, illustrating a need to improve their end-of-life (EOL) care. In 2006, the Nebraska End-of-Life Survey was mailed to 2,713 urban and rural Nebraskan adults' homes; 44 of 324 first-time respondents (14%) were veterans. This article compares survey responses from veterans and nonveterans and discusses four issues: personal desires during the dying process, fear of dying, completion of advance directives, and communication preferences. Compared to nonveterans, veterans were significantly less likely to want friends or family visiting at EOL, less likely to place importance on being at peace spiritually, less afraid of dying alone, more likely to turn to a spouse to initiate EOL conversations, and less trusting of primary physicians on EOL issues. In addition, veterans had higher rates of completion of advance directives. Examining the survey responses can help guide clinical oncology nurses in delivering EOL care to veterans.

Medical care and emotional distress associated with advanced cancer patients' end-of-life discussions with their physicians

6505 Background: Physicians are concerned that end-of-life (EOL) discussions may distress terminally ill patients, and may not offer benefit. Little is known, however, about whether EOL discussions are associated with psychological distress and medical care received at the EOL. Methods: Coping with Cancer (CwC) is an NCI/NIMH-funded, prospective, longitudinal, multi-institutional study of 603 advanced cancer patients. Patients were interviewed on enrollment and followed until death; medical care received in the last week of life was obtained from chart review. Patients who reported having had EOL conversations were compared with those who did not on their degree of emotional distress [e.g. severity of psychological symptoms such as worry and rates of Major Depressive Disorder (MDD) using the Structured Clinical Interview for DSM-IV], terminal illness acknowledgement, treatment preferences, and medical care. Results: 188 of 603 patients (31.2%) reported EOL discussions with physicians. No mental health differences were found. Patients reporting EOL discussions were not more likely to meet criteria for MDD [rates were 7.2% vs. 7.4%, odds ratio (OR)=0.98, 95% confidence interval (CI) 0.50–1.90] or feel “nervous or worried” [adjusted least mean squares 2.81 vs. 2.77, t=-0.16, p=0.87]. They were more likely to acknowledge being terminally ill [adjusted OR (AOR)=2.24, CI 1.45–3.44], value comfort care over life extension (AOR=3.23, CI 2.02–5.17), and complete a DNR order (AOR= 3.62, CI 2.36–5.56). Among the 323 CwC decedents, patients reporting EOL conversations were less likely to undergo ventilation (AOR= 0.04, CI 0.004–0.43) or ICU admission (AOR= 0.21, CI 0.05–0.88), and more likely to receive hospice (AOR=2.13, CI 1.13–4.02). After propensity score matching, lower rates of ICU admission (AOR 0.21, CI 0.05–0.88) and ventilation (AOR 0.11, CI 0.01–0.87) remained. Conclusions: EOL care discussions between physicians and patients with advanced cancer are not associated with psychological distress. Furthermore, these discussions may result in increased patient understanding of illness severity, fewer invasive procedures, and lower rates of ICU admission at the EOL. No significant financial relationships to disclose.