End-of-life Care Discussions Research Articles

Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients.

Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. Systematic review. Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.

Dances With Denial: Have Medical Oncology Outpatients Conveyed Their End-of-Life Wishes and Do They Want To?

Objectives: This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have already discussed and documented their end-of-life (EOL) wishes; (2) when and with whom they would prefer to convey their EOL wishes; (3) the EOL issues they would want to discuss; and (4) the association between perceived cancer status and advance care planning (ACP) participation. Methods: Adult medical oncology outpatients were approached in the waiting room of an Australian tertiary treatment center. Consenting participants completed a pen-and-paper survey assessing participation in ACP, preferences for conveying EOL wishes, timing of EOL discussions, and EOL issues they want to be asked about. Results: A total of 203 patients returned the survey (47% of eligible). EOL discussions occurred more frequently with support persons (47%) than with doctors (7%). Only 14% had recorded their wishes, and 45% had appointed an enduring guardian. Those who perceived their cancer as incurable were more likely to have participated in ACP. If facing EOL, patients indicated that they would want family involved in discussions (85%), to be able to write down EOL wishes (82%), and to appoint enduring guardians (91%). Many (45%) preferred the first discussion to happen when their disease became incurable. Slightly less than one-third thought discussions regarding EOL should be patient-initiated. Most agreed doctors should ask about preferred decision-making involvement (92%), how important it is that pain is managed well (95%), and how important it is to remain conscious (82%). Fewer (55%) wanted to be asked about the importance of care extending life. Conclusions: Many patients would like to have discussions regarding EOL care with their doctor and involve their support persons in this process. Only a small percentage of respondents had discussed EOL care with their doctors, recorded their wishes, or appointed an enduring guardian. The first step requires clinicians to ask whether an individual patient wishes to discuss EOL issues, in what format, and at what level of detail.

Please Ask Gently: Using Culturally Targeted Communication Strategies to Initiate End-of-Life Care Discussions With Older Chinese Americans.

Health-care providers (HCPs) find facilitating end-of-life (EOL) care discussions challenging, especially with patients whose ethnicities differ from their own. Currently, there is little guidance on how to initiate and facilitate such discussions with older Chinese Americans (≥55 years) and their families. To explore communication strategies for HCPs to initiate EOL care discussions with older Chinese Americans in the San Francisco Bay Area. This qualitative (focused) ethnographic study included field observations and individual semistructured interviews with 14 community-dwelling older Chinese Americans who lived independently at home, 9 adult children, and 7 HCPs. Responses were analyzed using open coding, memos, and comparison across participants. The study participants emphasized the importance of assessing readiness for early EOL care discussions. All recommended using indirect communication approaches to determine older Chinese Americans' readiness. Indirect communication can be culturally targeted and applied at both system-wide (ie, health-care system) and individual (ie, HCP) levels. To institutionalize the practice, health-care facilities should implement EOL care discussion inquiries as part of routine during check-in or intake questionnaires. In individual practice, using depersonalized communication strategies to initiate the discussion was recommended to determine older Chinese Americans' readiness. Assessing readiness should be an essential and necessary action for early EOL care discussions. Culturally targeted assessment of older Chinese Americans includes using indirect communication approaches to initiate an EOL care discussion to determine their readiness. In addition to health-care system integration, providers should implement and evaluate proposed EOL discussion initiation prompts with their older Chinese American patients.

Illness Understanding and End-of-Life Care Communication and Preferences for Patients With Advanced Cancer in South Africa

PurposeThe understanding of patients with cancer of their condition and their wishes regarding care as they approach end of life (EoL) have been studied more in high-income countries than in low- and middle-income countries (LMICs).Patients and MethodsData were analyzed from a cohort study (N = 221) of patients with advanced cancer who were recruited from a palliative care center in Soweto, South Africa (LMIC), between May 2016 and June 2017. Patients were asked about their understanding of their illness, estimated life expectancy, EoL care communication, and EoL care preferences.ResultsOnly 13 patients (5.9%) acknowledged that they were terminally ill; nine patients (4.1%) estimated accurately that they had months, not years, left to live. A total of 216 patients (97.7%) reported that they had not had an EoL care discussion with their physician, and 170 patients (76.9%) did not want to know their prognosis even if the doctor knew it. Most patients preferred comfort care (72.9%; n = 161) to life-extending care (14.0%; n = 31), and did not want to be kept alive using extreme measures (80.5%; n = 178) or have their doctors do everything possible to extend their lives (78.3%; n = 173). Finally, 127 patients (57.5%) preferred to die at home, and 51 (23.1%) preferred to die in the hospital. Most patients (81.0%; n = 179) had funeral plans.ConclusionSouth African patients demonstrated less awareness of the fact that they were terminally ill, were less likely to have discussed their prognosis with their doctor, and more strongly preferred comfort care to life-extending EoL care than US and other LMIC patients in prior research. These differences highlight the need for culturally appropriate, patient-centered EoL care for South African patients with advanced cancer as well as to determine individual preferences and needs in all EoL settings.

Accurate Prognostic Awareness Facilitates, Whereas Better Quality of Life and More Anxiety Symptoms Hinder End-of-Life Care Discussions: A Longitudinal Survey Study in Terminally Ill Cancer Patients' Last Six Months of Life

ContextTerminally ill cancer patients do not engage in end-of-life (EOL) care discussions or do so only when death is imminent, despite guidelines for EOL care discussions early in their disease trajectory. Most studies on patient-reported EOL care discussions are cross sectional without exploring the evolution of EOL care discussions as death approaches. Cross-sectional studies cannot determine the direction of association between EOL care discussions and patients' prognostic awareness, psychological well-being, and quality of life (QOL). Objectives/MethodsWe examined the evolution and associations of accurate prognostic awareness, functional dependence, physical and psychological symptom distress, and QOL with patient-physician EOL care discussions among 256 terminally ill cancer patients in their last six months by hierarchical generalized linear modeling with logistic regression and by arranging time-varying modifiable variables and EOL care discussions in a distinct time sequence. ResultsThe prevalence of physician-patient EOL care discussions increased as death approached (9.2%, 11.8%, and 18.3% for 91–180, 31–90, and 1–30 days before death, respectively) but only reached significance in the last month. Accurate prognostic awareness facilitated subsequent physician-patient EOL care discussions, whereas better patient-reported QOL and more anxiety symptoms hindered such discussions. The likelihood of EOL care discussions was not associated with levels of physical symptom distress, functional dependence, or depressive symptoms. ConclusionPhysician-patient EOL care discussions for terminally ill Taiwanese cancer patients remain uncommon even when death approaches. Physicians should facilitate EOL care discussions by cultivating patients' accurate prognostic awareness early in their cancer trajectory when they are physically and psychologically competent, with better QOL, thus promoting informed and value-based EOL care decision making.

Sharing End-of-Life Care Preferences with Family Members: Who Has the Discussion and Who Does Not.

Research suggests that greater engagement in family discussions concerning end-of-life (EOL) care preferences could improve advance care planning and EOL outcomes. However, a substantial number of people have not had such discussions. The study's objective was to understand attitudes and experiences influencing engagement in discussions of EOL care preferences with family members, including the role of healthcare providers in such discussions. We conducted focus group interviews with 36 non-Hispanic White, African American, and Hispanic community-dwelling participants. Participants were divided among groups to explore differences between those who had or had not engaged in EOL care discussions. Atlas.ti version 7 was used to analyze data employing an open-coding method. Participants' mean age was 70 (range: 58-87); three-fourths were female (n = 27). Twenty were white, non-Hispanic; 10 were African American; and 6 were Hispanic. Four themes emerged from the data, (1) being proactive or passive/reactive; (2) perceiving discussion of death as normal or abnormal; (3) response to family resistance/disconnection; and (4) knowledge acquired. A fifth theme, the role of healthcare providers in family EOL care discussions, resulted from facilitators' questions. Theme examination led to identification of a central category, decision-making. It is important to understand the differing experiences and attitudes of those who do or do not engage in EOL discussions. Research is needed on healthcare practitioners' use of decision-making tools to help patients discuss their EOL care preferences with family and others, the goal of which is to provide care consistent with patients' goals.

Experiences and Opinions Related to End-of-Life Discussion: From Oncologists' and Resident Physicians' Perspectives.

PurposeThe aims of this study were to explore how oncologists and resident physicians practice end-of-life (EOL) discussions and to solicit their opinions on EOL discussions as a means to improve the quality of EOL care.Materials and MethodsA survey questionnaire was developed to explore the experiences and opinions about EOL discussions among oncologists and residents. Descriptive statistics, the t test, and the chisquare test were performed for the analyses.ResultsA total of 147 oncologists and 229 residents participated in this study. The study respondents reported diverse definitions of “terminal state,” and mostrespondents tried to disclose the patient’s condition to the patient and/or family members. Both groups were involved in EOL care discussions, with a rather low satisfaction level (57.82/100). The best timing to initiate discussionwas consideredwhen metastasis or disease recurrence occurred orwhen withdrawal of chemotherapy was anticipated. Furthermore, the study respondents suggested that patients and their family members should be included in the EOL discussion. Medical, legal, and ethical knowledge and communication difficulties along with practical issues were revealed as barriers and facilitators for EOL discussion.ConclusionThis study explored various perspectives of oncologists and resident physicians for EOL discussion. Since the Life-Sustaining-Treatment Decision-Making Act will be implemented shortly in Korea, now is the time for oncologists and residents to prepare themselves by acquiring legal knowledge and communication skills. To achieve this, education, training, and clinical tools for healthcare professionals are required.

Identifying latent factors in the Living With Cancer (LWC) patient-reported outcomes (PRO) tool for patients with advanced malignancies.

150 Background: End-of-Life Care (EOLC) discussions are frequently delayed past the time of usefulness, resulting in cancer patients (pts) receiving aggressive, expensive, non-desired care. The “Living with Cancer” project has developed a 7-item, 5-level Likert scale PRO tool that evaluates, from the pt perspective, their concerns regarding performance status, pain, family/financial burden, and depression during their cancer journey. The instrument was shown to correlate well with the oncologist’s opinion of appropriateness to continue treatment and might be useful as a quality metric in guiding timing of EOLC discussions (J Palliative Med 2016). Methods: The LWC PRO was administered to 1302 pts with advanced malignancies receiving care by Regional Cancer Care Associates (NJ) between Sept 2015 and Aug 2016, with confirmation of life status in Sept 2016. Exploratory factor analysis was conducted on the LWC instrument to identify latent constructs (factors) contributing to the item scores. The data set was deemed suitable for factor analysis based on standard statistical tests, including Bartlett’s test (p < 0.001). Results: A 3-factor model comprised of factors (1) Global functioning (using 5/7 items), (2) Financial toxicity (1/7 items), and (3) Depression (1/7 items) was fitted to the data using maximum likelihood and promax rotation (p = 0.043). Factor scores were compared between the cohort of 133 pts who expired within 3 months of completing their final survey and the 1124 who remained alive after 3 months. The mean global functioning score was significantly greater (worse) in the expired cohort (p < 0.001), suggesting the PRO description of distress correlated with survival. Financial toxicity and depression factor scores did not correlate with survival. Conclusions: The 7-item LWC PRO instrument contains 5 items defined by a global functioning factor that discriminates based on 3-month overall survival. This finding adds further evidence that the 7-item PRO tool can be used to time EOLC discussions with the aim to ensure better correlation between pts’ treatment desires and delivered care. LWC may also serve as a quality metric evaluating timing of EOLC discussions.

An end-of-life practice survey among clinical nephrologists associated with a single nephrology fellowship training program.

BackgroundOur nephrology fellowship requires specific training in recognition and referral of end-stage renal disease patients likely to benefit from palliative and hospice care.MethodsTo identify end-of-life (EOL) referral barriers that require greater training emphasis, we performed a cross-sectional, 17-item anonymous online survey (August–October 2015) of 93 nephrologists associated with the program since 1987.ResultsThere was a 61% response rate (57/93 surveys). Ninety-five percent practiced clinical nephrology (54/57). Of these, 51 completed the survey (55% completion rate), and their responses were analyzed. Sixty-four percent were in practice >10 years; 65% resided in the Southern USA. Ninety-two percent felt comfortable discussing EOL care, with no significant difference between those with ≤10 versus >10 years of practice experience (P = 0.28). Thirty-one percent reported referring patients to EOL care ‘somewhat’ or ‘much less often’ than indicated. The most frequent referral barriers were: time-consuming nature of EOL discussions (27%); difficulty in accurately determining prognosis for <6-month survival (35%); patient (63%) and family (71%) unwillingness; and patient (69%) and family (73%) misconceptions. Fifty-seven percent would refer more patients if dialysis or ultrafiltration could be performed in hospice. Some reported that local palliative care resources (12%) and hospice resources (6%) were insufficient.ConclusionsThe clinical nephrologists surveyed were comfortable with EOL care discussion and referral. Patient, family, prognostic and system barriers exist, and many reported lower than indicated referral rates. Additional efforts, including, but not limited to, EOL training during fellowship, are needed to overcome familial and structural barriers to facilitate nephrologist referral for EOL care.

Preparing Pediatric Healthcare Professionals for End-of-Life Care Discussions: An Exploratory Study.

Preparedness to initiate end-of-life (EoL) discussions is a confronting and daunting task for all healthcare professionals. We conducted a group interview to explore healthcare professionals' experiences of preparing for EoL discussions with the patient and their family in a pediatric context. To identify what pediatric healthcare professionals consider important when preparing for an EoL discussion. A qualitative design using a group interview. Two open-ended questions were asked: (1) How could preparedness to initiate EoL care discussions between healthcare professionals and the patient and family be enhanced? (2) What education resources/strategies could be developed to support preparation for EoL care discussions? Healthcare professionals, including medical, nursing, and allied health professionals working in pediatric palliative care settings across Queensland, Australia. These settings included major tertiary hospitals, general practice, community, and nongovernment organizations. A convenience sample of 36 healthcare professionals consented to participate in the study. An analysis of the data identified seven themes that had relevance for preparing for an EoL discussion: communication, healthcare professional perspectives, interdisciplinary team role, patient and family perspectives, practical issues, addressing mistakes, and healthcare professional education. Pediatric healthcare professionals confirmed that gaps exist in preparing for an EoL discussion. The findings support a need for further research in two areas. First, a systematic review of interdisciplinary resources that are available to support healthcare professionals in preparing for EoL discussions is recommended. Second, evidence-based interdisciplinary interventions to support pediatric EoL discussions need to be developed and evaluated.

Will Any Amount of Original Research Truly Improve End-of-Life Decision Making for Critically Ill Elderly Patients?

Purpose: To review the manuscript: “Outcomes of critically ill medical and surgical patients: A multicenter cohort study”, in order to evaluate its clinical utility for goals of care discussions prior to ICU admission. Methods: A commentary by the author on the strengths, weaknesses and clinical applicability of this manuscript, as well as the body of literature that attempts to aid prognostication for critically ill elderly patients. Conclusion: Clinicians who are regularly tasked with guiding substitute decision makers during end of life care discussions should incorporate their clinical opinion, patient’s previously expressed wishes and results from applicable clinical studies, into their recommendations.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences.

Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants' multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis

End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients affected by such conditions die without a formal end of life plan in place. We performed a systematic review to investigate conversations regarding end of life care between healthcare professionals and younger adult patients with life-limiting neuromuscular diseases. The search strategy included terms that focused on death and dying along with other factors that could impact length of life.The review found a very limited body of literature regarding end of life care conversations between young people affected by neuromuscular diseases and health professionals. The views and preferences of patients themselves have not been investigated. There is a shared reluctance of patients, family carers and healthcare professionals to initiate end of life care discussions. There are many factors that need to be investigated further in order to develop a consensus that would allow healthcare professionals to engage patients in end of life care conversations allowing them to face the end of their lives with appropriate plans in place.

Holistic approach to breast cancer and palliative care.

At The Christie NHS Foundation Trust, Manchester, concerns that end of life care discussions were occurring too late in breast cancer cases led to earlier introduction of palliative care. Benefits include reduced hospital admissions during end of life and improved symptom management. The authors encourage nurses to support an integrated approach to enhance care provision for patients.

Validation of the Living With Cancer (LWC) PRO tool for identifying patients (pts) with cancer appropriate for end-of-life care consultations.

85 Background: End-of-life care (EOLC) discussions for pts with advanced malignancies are often delayed resulting in unwanted, wasteful treatment. COTA Inc has developed a 7-item PRO instrument (LWC) to facilitate identification of pts in distress. A pilot study of 433 pts at a single institution was able to determine a threshold distress score (&gt; 28) correlating with physician assessment of appropriateness for EOLC consultation (2015 ASCO Palliative Care Symposium). Methods: LWC explores 4 personhood and clinical domains (performance status, pain, burden, and depression). Each question presents a 5-level Likert scale supplemented by a pt derived weighting of importance. The PRO was completed by 700 pts at Regional Cancer Care Associates throughout NJ between Sept 2015 and Apr 2016. The primary oncologists separately/independently classified 611 pts as appropriate to continue therapy (Group 1) and 89 pts as appropriate to curtail therapy (Group 2). Results: A score of 29 on LWC (range 0-112) was the threshold achieving optimal sensitivity (51%) and specificity (78%) in identifying pts in Group 2 (51% of pts whose oncologists felt appropriate to curtail therapy scored &gt; 29; 78% of pts whose oncologists felt appropriate to continue therapy scored &lt; 29). The threshold had positive predictive value 25% and 8% false omission rate (1 - negative predictive value) (25% pts scoring &gt; 29 should be in Group 2; 8% scoring &lt; 29 should be in group 2). A score 29 was 2.3 times more likely in pts belonging to Group 2 (likelihood ratio), and was a predictor of physician category (logistic regression p &lt; 0.0001). LWC had a Cronbach’s alpha coefficient 0.85, indicating internal consistency and ability to measure a single latent construct. 3 questions (Performance Status, Wants, and Lack of Pleasure) contained the most information (estimate the latent trait with precision) and had high discrimination parameters (discriminate between pts lacking latent trait and displaying latent trait). Conclusions: The LWC instrument is able to identify cancer pts for whom EOLC discussions may be appropriate. A study to determine the correlation between the threshold score, EOLC consultation rate and overall survival is underway.

Characterizing End-of-Life Care after Geriatric Burns at a Verified Level I Burn Center.

End-of-life (EoL) care after geriatric burns (geri-burns) is understudied. To examine the practices of burn surgeons for initiating EoL discussions and the impact of decisions made on the courses of geri-burn patients who died after injury. This retrospective cohort study examined all subjects ≥65 years who died on our Level I burn service from April 1, 2009, to December 31, 2014. Measurements obtained were timing of first EoL discussion (EARLY <24 hours post-admission; LATE ≥24 hours post-admission), decisions made, age, total body surface area burned, and calculated probability of death at admission. The cohort consisted of 57 subjects, of whom 54 had at least one documented EoL care discussion between a burn physician and the patient/surrogate. No differences were seen between groups for the likelihood of an immediate decision for comfort care after the first discussion (p = 0.73) or the mean number of total discussions (p = 0.07). EARLY group subjects (n = 38) had significantly greater magnitudes of injury (p = 0.002), calculated probabilities of death at admission (p ≤ 0.001), shorter times to death (p ≤ 0.001), and fewer trips to the operating theater for burn excision and skin grafting (p ≤ 0.001) than LATE subjects (n = 16). LATE subjects' first discussion occurred at a mean of 9.3 ± 10.0 days. The vast majority of geri-burn deaths on our burn service occur after a discussion about EoL care. The timing of these discussions is driven by magnitude of injury, and it does not lead to higher proportions of an immediate decision for comfort care. The presence and timing of EoL discussions bears further study as a quality metric for geri-burn EoL care.

A Patient-Reported Outcome Instrument to Facilitate Timing of End-of-Life Discussions among Patients with Advanced Cancers.

Honoring the wishes of cancer patients is a responsibility of oncologists; however, end-of-life care (EOLC) discussions are frequently delayed past the point of usefulness. To develop a patient-reported outcome (PRO) screening tool that facilitates timing of EOLC discussions. A seven-item PRO instrument covering four clinical and personhood domains [performance status, pain, burden (financial and family), and depression] was administered to patients with advanced malignancies undergoing noncurative therapy. The PRO instrument included the patient's assessment of the importance of each domain. Results were correlated with the oncologist's assessment of appropriateness of continuing aggressive therapy. Four hundred thirty-three patients fully completed the PRO instrument between February and March 2015 at a single outpatient cancer center. There was a difference (p < 0.0001) in median scores among cohorts deemed by their oncologists appropriate to continue noncurative treatments versus patients whose physicians were contemplating or actively engaged in EOLC discussions. The scores for the four individual domains also differed among cohorts. An upper threshold score comprising 46% of patients deemed appropriate to curtail treatment (but inclusive of only 26% of patients deemed appropriate to continue) was determined, facilitating identification of patients for EOLC discussions. A seven-item patient-centric PRO instrument was able to separate advanced malignancy patients into cohorts who their physicians deemed were at differing stages in their cancer journey with increasing needs for advance care planning. A study to determine if the threshold scores identified in this pilot correlate with palliative/EOL consultation frequency and patient survival is underway.

Outpatient Advance Care Planning Internal Medicine Resident Curriculum: Valuing Our Patients' Wishes.

Although many studies have illustrated the discomfort that resident physicians feel when discussing end-of-life (EOL) issues with their patients, fewer studies have addressed interventions to directly increase medical resident proficiency and comfort in conducting these discussions and for translating these beliefs into a formal advance care plan. We report on an innovative curriculum conducted at The University of Chicago (NorthShore) internal medicine residency to improve residents' proficiency and comfort in leading outpatient advance care planning (ACP) discussions. Four educational components were executed. First, residents completed an on-line module introducing ACP and guiding residents to complete their own ACP. Second, residents attended a didactic "How To" lecture given by physicians with expertise in ACP that emphasized ACP communication tools and a video demonstration. Third, residents completed a video-recorded simulation-based ACP discussion with a standardized patient. Finally, residents conducted an ACP outpatient encounter with one of their continuity clinic patients. Expert preceptors directly observed, evaluated, and provided feedback to residents during both patient encounters. Residents were surveyed before and immediately after the curriculum using a nine-variable questionnaire, which assessed the resident's training and comfort with ACP. Sixteen second year residents completed the curriculum and surveys. Precurriculum and post-curriculum mean change on a Likert scale of 1 (uncomfortable) to 5 (very comfortable) was compared using paired t-tests. Results demonstrated statistically significant improvements in the following comfort level variables: eliciting understanding of health and prognosis (pre 3.63 vs. post 4.38, p = 0.035), discussing EOL care based on patient values (pre 3.50 vs. post 4.38, p = 0.008), specifically discussing EOL care based on patient values in the outpatient setting (pre 2.75 vs. post 4.31, p = 0.001) and initiating an advance directive and medical power of attorney (pre 2.56 vs. post 4.19, p < 0.001). A multimodality curriculum including self-directed learning, lectures, and practice with simulated and actual outpatients with active reflection and feedback is effective in improving resident comfort level and formal training in ACP. Further research is needed to understand whether these interventions will translate into an increased frequency of discussions with patients about ACP after residency training.

Factors Impacting Advance Care Planning among African Americans: Results of a Systematic Integrated Review.

African Americans (AA) are more likely to receive worse end-of-life (EOL) care and are less likely to participate in advance care planning (ACP) than white Americans. Our goal was to understand factors impacting ACP among AA and explore their interactions, in order to guide further research and intervention development. We systematically identified, using Medline, Embase, and World of Science databases, the quantitative and qualitative ACP literature in which AA were included. We assessed the quality of these studies and evaluated the literature in an iterative and integrative fashion, using themes developed from the qualitative literature to understand and categorize findings from the quantitative literature. Thirty-eight mostly moderate and low quality quantitative studies focused largely on advance directive (AD) completion. Whereas most conclude that AA, when compared with white Americans, prefer more aggressive care, participate less in ACP, and are more likely to informally discuss EOL care than to formally document wishes, study findings were contradictory in a number of domains. Fourteen qualitative studies revealed a number of themes that informed the development of an empirically derived model to explain the relationship of factors impacting ACP for AA along historical and structural axes. The multiple factors that impact ACP for AA are inter-related and may result in part from historical realities that shape contemporary experience. We know little from the data about how best to improve ACP in AA. That AA appear to prefer informal discussions about ACP to formal documentation of preferences suggests that future research should focus on improving ACP conversations among clinicians, patients, and their families in order to improve the receipt of goal-concordant care at EOL.

Preferences for Life-Sustaining Treatments and Associations With Accurate Prognostic Awareness and Depressive Symptoms in Terminally Ill Cancer Patients' Last Year of Life

ContextThe stability of life-sustaining treatment (LST) preferences at end of life (EOL) has been established. However, few studies have assessed preferences more than two times. Furthermore, associations of LST preferences with modifiable variables of accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms have been investigated in cross-sectional studies only. ObjectivesTo explore longitudinal changes in LST preferences and their associations with accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms in terminally ill cancer patients' last year. MethodsLST preferences (cardiopulmonary resuscitation, intensive care unit [ICU] care, intubation, and mechanical ventilation) were measured approximately every two weeks. Changes in LST preferences and their associations with independent variables were examined by hierarchical generalized linear modeling with logistic regression. ResultsParticipants (n = 249) predominantly rejected cardiopulmonary resuscitation, ICU care, intubation, and mechanical ventilation at EOL without significant changes as death approached. Patients with inaccurate prognostic awareness were significantly more likely than those with accurate understanding to prefer ICU care, intubation, and mechanical ventilation than to reject these LSTs. Patients with more severe depressive symptoms were less likely to prefer ICU care and to be undecided about wanting ICU care and mechanical ventilation than to reject such LSTs. LST preferences were not associated with physician-patient EOL care discussions, which were rare in our sample. ConclusionLST preferences are stable in cancer patients' last year. Facilitating accurate prognostic awareness and providing adequate psychological support may counteract the increasing trend for aggressive EOL care and minimize emotional distress during EOL care decisions.