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BACKGROUND: Nearly one-quarter of all Americans die in the ICU. Many of their deaths are anticipated and occur following the withdrawal of mechanical ventilation (WMV). However, there are few data on which to base best practices for interdisciplinary ICU teams to conduct WMV. RESEARCH QUESTION: What are the perceptions of current WMV practices among ICU clinicians, and what are their opinions of processes that might improve the practice of WMV at end of life in the ICU? STUDY DESIGN AND METHODS: This prospective two-center observational study conducted in Boston, Massachusetts, the Observational Study of the Withdrawal of Mechanical Ventilation (OBSERVE-WMV) was designed to better understand the perspectives of clinicians and experience of patients undergoing WMV. This report focuses on analyses of qualitative data obtained from in-person surveys administered to the ICU clinicians (nurses, respiratory therapists, and physicians) caring for these patients. Surveys assessed a broad range of clinician perspectives on planning, as well as the key processes required for WMV. This analysis used independent open, inductive coding of responses to open-ended questions. Initial codes were reconciled iteratively and then organized and interpreted using a thematic analysis approach. Opinions were assessed on how WMV could be improved for individual patients and the ICU as a whole. RESULTS: Among 456 eligible clinicians, 312 in-person surveys were completed by clinicians caring for 152 patients who underwent WMV. Qualitative analyses identified two main themes characterizing high-quality WMV processes: (1) good communication (eg, mutual understanding of family preferences) between the ICU team and family; and (2) medical management (eg, planning, availability of ICU team) that minimizes patient distress. Team member support was identified as an essential process component in both themes. INTERPRETATION: Clinician perceptions of the appropriateness or success of WMV prioritize the quality of team and family communication and patient symptom management. Both are modifiable targets of interventions aimed at optimizing overall WMV.
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BACKGROUND: The full-scale invasion of Ukraine by Russia in 2022 has significantly impacted the country's healthcare system including surgical education. To assess the current state and identify the strengths and opportunities for the improvement of Ukraine's surgical education system during the peri-war period, this study is one of the first to explore the state of surgical education across Ukraine in peri-war, providing essential insights for current and postwar healthcare reconstruction. METHODS: This qualitative study involved semi-structured interviews with 24 Ukrainian surgical residents, surgeons, and program leadership from various regions. The study focused on clinical training, didactics, mentorship, autonomy, resident evaluation, the impact of war, and gender disparities in surgical education. Data analysis was conducted using a rapid qualitative analysis technique. RESULTS: Interviews revealed strengths in surgical education such as adaptability to war conditions and international collaborations. However, opportunities for improvement were identified including a lack of structured clinical and didactic experiences, limited autonomy and access to simulators, gender discrimination, and war-time challenges. These issues highlight a need for more comprehensive training and support systems for surgical trainees in Ukraine. CONCLUSIONS: The study underscores the resilience and adaptability of Ukrainian surgical education in the face of war while also emphasizing the need for significant improvements. It calls for implementing structured training programs, enhanced mentorship, and attention to gender equality. These findings are crucial for improving surgical education in Ukraine and can be used as an example for other lower-middle-income countries, especially in conflict settings.
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Internato e Residência , Pesquisa Qualitativa , Ucrânia , Humanos , Feminino , Masculino , Internato e Residência/organização & administração , Cirurgia Geral/educação , Mentores , Melhoria de Qualidade , Adulto , Entrevistas como AssuntoRESUMO
INTRODUCTION: Spanish-speaking trauma and burn patients have unique needs in their post-discharge care navigation. The confluence of limited English proficiency, injury recovery, mental health, socioeconomic disadvantages, and acute stressors following hospital admission converge to enhance patients' vulnerability, but their specific needs and means of meeting these needs have not been well described. METHODS: This prospective, cross-sectional survey study describes the results of a multi-institutional initiative devised to help Spanish-speaking trauma and burn patients in their care navigation after hospitalization. The pathway consisted of informational resources, intake and follow up surveys, and multiple points of contact with a community health worker who aids in accessing community resources and navigating the healthcare system. RESULTS: From January 2022-November 2023, there were 114 patients identified as eligible for the NESTS pathway. Of these, 80 (70.2%) were reachable and consented to participate, and 68 of these patients were approached in person during their initial hospitalization. After initial screening, 60 (75.0%) of the eligible patients had a mental health, social services, or other need identified via our survey instrument. During the initial consultation with the CHW, 48 of the 60 patients with any identified need were connected to a resource (80%). Food support was the most prevalent need (N=46, 57.5%). More patients were connected to mental health resources (N=16) than reported need in this domain (N=7). CONCLUSIONS: The NESTS pathway identified the specific needs of Spanish-speaking trauma and burn patients in their recovery, notably food, transportation, and utilities. The pathway also addressed disparities in post-discharge care by connecting patients with community resources, with particular improvement in access to mental healthcare.
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BACKGROUND: Despite mandated insurance coverage since 2006 and robust health infrastructure in urban settings with high concentrations of minority patients, race-based disparities in prostate cancer (PCa) treatment persist in Massachusetts. In this qualitative study, the authors sought to identify factors driving inequities in PCa treatment in Massachusetts. METHODS: Four hospitals offering PCa treatment in Massachusetts were selected using a case-mix approach. Purposive sampling was used to conduct semistructured interviews with hospital stakeholders. Additional interviews were conducted with representatives from grassroots organizations providing PCa education. Two study staff coded the interviews to identify major themes and recurrent patterns. RESULTS: Of the 35 informants invited, 25 participated in the study. Although national disparities in PCa outcomes were readily discussed, one half of the informants were unaware that PCa disparities existed in Massachusetts. Informants and grassroots organization representatives acknowledged that patients with PCa are willing to face transportation barriers to receive treatment from trusted and accommodating institutions. Except for chief equity officers, most health care providers lacked knowledge on accessing or using metrics regarding racial disparities in cancer outcomes. Although community outreach was recognized as a potential strategy to reduce treatment disparities and engender trust, informants were often unable to provide a clear implementation plan. CONCLUSIONS: This statewide qualitative study builds on existing quantitative data on the nature and extent of disparities. It highlights knowledge gaps in recognizing and addressing racial disparities in PCa treatment in Massachusetts. Improved provider awareness, the use of disparity metrics, and strategic community engagement may ensure equitable access to PCa treatment. PLAIN LANGUAGE SUMMARY: Despite mandated insurance and urban health care access, racial disparities in prostate cancer treatment persist in Massachusetts. This qualitative study revealed that, although national disparities were acknowledged, awareness about local disparities are lacking. Stakeholders highlighted the importance of ancillary services, including translators, rideshares, and navigators, in the delivery of care. In addition, whereas hospital stakeholders were aware of collected equity outcomes, they were unsure whether and who is monitoring equity metrics. Furthermore, stakeholders agreed that community outreach showed promise in ensuring equitable access to prostate cancer treatment. Nevertheless, most interviewed stakeholders lacked clear implementation plans.
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Importance: Timely diagnosis and treatment are of paramount importance for patients with head and neck cancer (HNC) because delays are associated with reduced survival rates and increased recurrence risk. Prompt referral to HNC specialists is crucial for the timeliness of care, yet the factors that affect the referral and triage pathway remain relatively unexplored. Therefore, to identify barriers and facilitators of timely care, it is important to understand the complex journey that patients undertake from the onset of HNC symptoms to referral for diagnosis and treatment. Objective: To investigate the referral and triage process for patients with HNC and identify barriers to and facilitators of care from the perspectives of patients and health care workers. Design, Participants, and Setting: This was a qualitative study using semistructured interviews of patients with HNC and health care workers who care for them. Participants were recruited from June 2022 to July 2023 from HNC clinics at 2 tertiary care academic medical centers in Boston, Massachusetts. Data were analyzed from July 2022 to December 2023. Main Outcomes and Measures: Themes identified from the perspectives of both patients and health care workers on factors that hinder or facilitate the HNC referral and triage process. Results: In total, 72 participants were interviewed including 42 patients with HNC (median [range] age, 60.5 [19.0-81.0] years; 27 [64%] females) and 30 health care workers (median [range] age, 38.5 [20.0-68.0] years; 23 [77%] females). Using thematic analysis, 4 major themes were identified: the HNC referral and triage pathway is fragmented; primary and dental care are critical for timely referrals; efficient interclinician coordination expedites care; and consistent patient-practitioner engagement alleviates patient fear. Conclusions and Relevance: These findings describe the complex HNC referral and triage pathway, emphasizing the critical role of initial symptom recognition, primary and dental care, patient information flow, and interclinician and patient-practitioner communication, all of which facilitate prompt HNC referrals.
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Neoplasias de Cabeça e Pescoço , Pesquisa Qualitativa , Encaminhamento e Consulta , Triagem , Humanos , Masculino , Neoplasias de Cabeça e Pescoço/terapia , Neoplasias de Cabeça e Pescoço/diagnóstico , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Entrevistas como Assunto , Tempo para o TratamentoRESUMO
OBJECTIVE: To characterize the perceptions of surgeons, anesthesiologists, and geriatricians regarding perioperative CPR in surgical patients with frailty. SUMMARY BACKGROUND DATA: The population of patients undergoing surgery is growing older and more frail. Despite a growing focus on goal-concordant care, frailty assessment, and debate regarding the appropriateness of cardiopulmonary resuscitation (CPR) in patients with frailty, providers' views regarding frailty and perioperative CPR are unknown. METHODS: We performed qualitative thematic analysis of transcripts from semi-structured interviews of anesthesiologists (8), surgeons (10), and geriatricians (9) who care for high-risk surgical patients at two academic medical centers in Boston, MA. The interview guide elicited clinicians' understanding of frailty, approach to decision-making regarding perioperative CPR, and perceptions of perioperative CPR in frail surgical patients. RESULTS: We identified 5 themes: perceptions of perioperative CPR in patients with frailty vary by provider specialty; judgments regarding appropriateness of CPR in surgical patients with frailty are typically multifactorial and include patient goals, age, comorbidities, and arrest etiology; resuscitation in patients with frailty is sometimes associated with moral distress; biases such as ableism and ageism may skew clinicians' perceptions of appropriateness of perioperative CPR in patients with frailty; and evidence to guide risk stratification for patients with frailty undergoing perioperative CPR is inadequate. CONCLUSIONS: Anesthesiologists, surgeons, and geriatricians offer different accounts of frailty's relevance to judgments regarding CPR in surgical patients. Divergent views regarding frailty and perioperative CPR may impede efforts to deliver goal-concordant care and suggest a need for research to inform risk stratification, predict patient-centered outcomes, and understand the role of potential biases such as ageism and ableism.
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RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.
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Cuidados Paliativos na Terminalidade da Vida , Transplante de Rim , Assistência Terminal , Humanos , Estados Unidos , Cuidados Paliativos/métodos , Assistência Terminal/métodos , AloenxertosRESUMO
OBJECTIVES: To investigate the role of patients' personal social networks (SNs) in accessing head and neck cancer (HNC) care through patients' and health care workers' (HCWs) perspectives. STUDY DESIGN: Qualitative study. SETTING: Tertiary HNC centers at 2 academic medical centers, including 1 safety net hospital. METHODS: Patients with newly diagnosed HNC, and HCWs caring for HNC patients, aged ≥18 years were recruited between June 2022 and July 2023. Semistructured interviews were conducted with both patients and HCWs. Inductive and deductive thematic analysis was performed with 2 coders (κ = 0.82) to analyze the data. RESULTS: The study included 72 participants: 42 patients (mean age 57 years, 64% female, 81% white), and 30 HCWs (mean age 42 years, 77% female, 83% white). Four themes emerged: (1) Patients' SNs facilitate care through various forms of support, (2) patients may hesitate to seek help from their networks, (3) obligations toward SNs may act as barriers to seeking care, and (4) the SN composition and dedication influence care-seeking. CONCLUSION: Personal SNs play a vital role in prompting early care-seeking among HNC patients. SN-based interventions could enhance care and improve outcomes for HNC patients.
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Neoplasias de Cabeça e Pescoço , Aceitação pelo Paciente de Cuidados de Saúde , Humanos , Feminino , Adolescente , Adulto , Pessoa de Meia-Idade , Masculino , Pesquisa Qualitativa , Neoplasias de Cabeça e Pescoço/terapia , Pessoal de Saúde , Rede SocialRESUMO
OBJECTIVE: To understand medical interpreter's perspectives on surgical informed consent discussions and provide feedback for surgeons on improving these conversations. SUMMARY BACKGROUND DATA: Informed consent is a critical component of patient-centered surgical decision-making. For patients with limited English proficiency (LEP), this conversation may be less thorough, even with a medical interpreter, leaving patients with an inadequate understanding of their diagnosis or treatment options. METHODS: A semi-structured interview guide was developed with input from interpreters and a qualitative research expert. We purposively sampled medical interpreters representing multiple languages until thematic saturation was achieved. Participants discussed their experience with the surgical consent discussion and process. Interview transcripts were analyzed using emergent thematic analysis. RESULTS: Among 22 interpreters, there were ten languages represented and an average experience of 15 years (range 4-40 y). Four major themes were identified. First, interpreters consistently described their roles as patient advocates and cultural brokers. Second, interpreters reported unique patient attributes that influence the discussion, often based on patients' cultural values/expectations, anticipated decisional autonomy, and family support. Third, interpreters emphasized the importance of surgeons demonstrating compassion and patience, using simple terminology, conversing around the consent, providing context about the form/process, and initiating a pre-encounter discussion. Finally, interpreters suggested reducing legal terminology on consent forms and translation into other languages. CONCLUSIONS: Experienced interpreters highlighted multiple factors associated with effective and culturally tailored informed consent discussions. Surgeons should recognize interpreters' critical and complex roles, be cognizant of cultural variations among patients with LEP, and improve interpersonal and communication skills to facilitate effective understanding.
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Objetivos , Neoplasias Retais , Humanos , Neoplasias Retais/cirurgia , Preferência do PacienteRESUMO
Qualitative methods have been increasingly applied in our literature, providing richness to data and incorporating the nuances of patient and family perspectives. These qualitative research techniques provide breadth and depth beyond what can be gleaned through quantitative methods alone. When both quantitative and qualitative approaches are coupled, their findings provide complementary information which can further substantiate study conclusions. We thus aim to provide insight into qualitative and quantitative methods in comparison and contrast to each other, as well as guidance on when each approach is most apt. In relation, we also describe mixed methods and the theory supporting their framework. In doing so, we provide the foundation for an ensuing, more detailed exposition of qualitative methods.
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BACKGROUND: Elements of charrette planning were employed to develop and examine the relationship between transnationalism, culture and health. OBJECTIVE: This paper describes the partnership, the first two stages of the planning charrette and lessons learned. METHODS: During charrette planning phase 1 we collected data through social network interviews (n = 58), cultural conversations (n = 88), and photovoice (n = 9). In the second phase we performed five charrette planning meetings. Data were synthesized by the planning team. LESSONS LEARNED: The issue centered focus facilitated trust among partners. The holistic, iterative process to planning and interpreting preliminary data provided a deeper understanding of the issues under investigation. Community partners at the table held us accountable to the communities we were studying and infused an undercurrent of social justice in our work. CONCLUSIONS: There are advantages in employing a community engaged transdisciplinary team-based approach to the study of transnationalism, culture and health.
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Águias , Humanos , Animais , Pesquisa Participativa Baseada na Comunidade , Comunicação , ConfiançaRESUMO
Conservative kidney management (CKM) has been increasingly accepted as a therapeutic option for seriously ill patients with advanced chronic kidney disease. CKM is active medical management of advanced chronic kidney disease without dialysis, with a focus on delaying the worsening of kidney disease and minimizing symptom burden. CKM may be considered a suitable option for kidney transplant recipients with poorly functioning and declining allografts, defined as patients with low estimated glomerular filtration rate (<20 mL/min per 1.73 m2) who are approaching allograft failure. CKM may be a fitting option for transplant patients facing high morbidity and mortality with or without dialysis resumption, and it should be offered as a choice for this patient population. In this review, we describe clinical considerations in caring for patients with poorly functioning and declining kidney allografts, especially the unique decision-making process around kidney replacement therapies. We discuss ways to incorporate CKM as an option for these patients. We also discuss financial and policy considerations in providing CKM for this population. Patients with poorly functioning and declining kidney allografts should be supported throughout transitions of care by an interprofessional and multidisciplinary team attuned to their unique challenges. Further research on when, who, and how to integrate CKM into existing care structures for patients with poorly functioning and declining kidney allografts is needed.
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Falência Renal Crônica , Transplante de Rim , Insuficiência Renal Crônica , Humanos , Insuficiência Renal Crônica/cirurgia , Insuficiência Renal Crônica/epidemiologia , Diálise Renal , Taxa de Filtração Glomerular , Rim , Falência Renal Crônica/terapiaRESUMO
Importance: Geographic access, including mode of transportation, to health care facilities remains understudied. Objective: To identify sociodemographic factors associated with public vs private transportation use to access health care and identify the respondent, trip, and community factors associated with longer distance and time traveled for health care visits. Design, Setting, and Participants: This cross-sectional study used data from the 2017 National Household Travel Survey, including 16â¯760 trips or a nationally weighted estimate of 5â¯550â¯527â¯364 trips to seek care in the United States. Households that completed the recruitment and retrieval survey for all members aged 5 years and older were included. Data were analyzed between June and August 2022. Exposures: Mode of transportation (private vs public transportation) used to seek care. Main Outcomes and Measures: Survey-weighted multivariable logistic regression models were used to identify factors associated with public vs private transportation and self-reported distance and travel time. Then, for each income category, an interaction term of race and ethnicity with type of transportation was used to estimate the specific increase in travel burden associated with using public transportation compared a private vehicle for each race category. Results: The sample included 12â¯092 households and 15â¯063 respondents (8500 respondents [56.4%] aged 51-75 years; 8930 [59.3%] females) who had trips for medical care, of whom 1028 respondents (6.9%) were Hispanic, 1164 respondents (7.8%) were non-Hispanic Black, and 11â¯957 respondents (79.7%) were non-Hispanic White. Factors associated with public transportation use included non-Hispanic Black race (compared with non-Hispanic White: adjusted odds ratio [aOR], 3.54 [95% CI, 1.90-6.61]; P < .001) and household income less than $25â¯000 (compared with ≥$100â¯000: aOR, 7.16 [95% CI, 3.50-14.68]; P < .001). The additional travel time associated with use of public transportation compared with private vehicle use varied by race and household income, with non-Hispanic Black respondents with income of $25â¯000 to $49â¯999 experiencing higher burden associated with public transportation (mean difference, 81.9 [95% CI, 48.5-115.3] minutes) than non-Hispanic White respondents with similar income (mean difference, 25.5 [95% CI, 17.5-33.5] minutes; P < .001). Conclusions and Relevance: These findings suggest that certain racial, ethnic, and socioeconomically disadvantaged populations rely on public transportation to seek health care and that reducing delays associated with public transportation could improve care for these patients.
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Acessibilidade aos Serviços de Saúde , Viagem , Feminino , Humanos , Masculino , Estudos Transversais , Inquéritos e Questionários , Estados Unidos , Pessoa de Meia-Idade , IdosoRESUMO
INTRODUCTION: Serious illness is a life-limiting condition negatively impacting daily function, quality of life, or excessively straining caregivers. Over 1 million older seriously ill adults undergo major surgery annually, and national guidelines recommend that palliative care be available to all seriously ill patients. However, the palliative care needs of elective surgical patients are incompletely described. Understanding baseline caregiving needs and symptom burden among seriously ill older surgical patients could inform interventions to improve outcomes. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients ≥66 years who met an established serious illness definition from administrative data and underwent major elective surgery using Agency for Healthcare Research and Quality (AHRQ) criteria. Descriptive analyses were performed for preoperative patient characteristics, including: unpaid caregiving (no or yes); pain (none/mild or moderate/severe); and depression (no, CES-D < 3, or yes, CES-D ≥ 3). Multivariable regression was performed to examine the association between unpaid caregiving, pain, depression, and in-hospital outcomes, including hospital days (days admitted between discharge date and one-year post-discharge), in-hospital complications (no or yes), and discharge destination (home or non-home). RESULTS: Of the 1343 patients, 55.0% were female and 81.6% were non-Hispanic White. Mean age was 78.0 (SD 6.8); 86.9% had ≥2 comorbidities. Before admission, 27.3% of patients received unpaid caregiving. Pre-admission pain and depression were 42.6% and 32.8%, respectively. Baseline depression was significantly associated with non-home discharge (OR 1.6, 95% CI 1.2-2.1, p = 0.003), while baseline pain and unpaid caregiving needs were not associated with in-hospital or post-acute outcomes in multivariable analysis. CONCLUSIONS: Prior to elective surgery, older adults with serious illnesses have high unpaid caregiving needs and a prevalence of pain and depression. Baseline depression alone was associated with discharge destinations. These findings highlight opportunities for targeted palliative care interventions throughout the surgical encounter.
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Depressão , Qualidade de Vida , Humanos , Feminino , Idoso , Estados Unidos/epidemiologia , Masculino , Depressão/epidemiologia , Prevalência , Assistência ao Convalescente , Alta do Paciente , Medicare , Cuidadores , DorRESUMO
INTRODUCTION: Increasing numbers of individuals admitted to hospitals for trauma are older adults, many of whom also have underlying serious illnesses. Older adults with serious illness benefit from palliative care, but the palliative care needs of seriously ill older adults with trauma have not been elucidated. We hypothesize that older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours before trauma admission. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients 66 years or older who met an established definition of serious illness in surgery and were admitted with trauma. Descriptive analyses were performed for baseline patient characteristics, pre-admission pain (dichotomized as none/mild vs. moderate/severe), depression (dichotomized as no, Center for Epidemiologic Studies Depression scale [CES-D] < 3 vs. yes, CES-D ≥ 3), and unpaid caregiving hours (dichotomized as low (<30 h/month), high (≥30 h/month)). RESULTS: We identified 1741 patients, 67.4% were female and 86.8% White. Mean age was 83 (SD 7.5), and 60.3% had ≥4 comorbidities. The majority (62.9%) were admitted due to falls, 33.5% had isolated hip fracture. The prevalence of baseline moderate/severe pain and depression were 38.1% and 42.6%, respectively. Among the cohort, 42.2% had unpaid caregiving, of those 27.7% had ≥30 h/week of unpaid caregiving hours. CONCLUSIONS: Prior to trauma admission, older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours. These findings may inform targeted palliative care interventions to reduce symptom burden and post-discharge healthcare utilization.
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Assistência ao Convalescente , Cuidados Paliativos , Humanos , Feminino , Idoso , Estados Unidos/epidemiologia , Idoso de 80 Anos ou mais , Masculino , Depressão/epidemiologia , Alta do Paciente , Medicare , Dor/epidemiologiaRESUMO
BACKGROUND: Although advance care planning (ACP) for persons with dementia (PWD) can promote patient-centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians. METHODS: Qualitative study using semi-structured interviews (August 2018-December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision-making was approached, and how decision-making capacity was assessed. RESULTS: Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision-making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision-making assessments that allow PWD and carepartner involvement regardless of the patients' capacity. CONCLUSIONS: Clinicians found early ACP for PWD valuable in promoting patient-centered care among an at-risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models.
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Planejamento Antecipado de Cuidados , Demência , Médicos , Humanos , Tomada de Decisões , Pesquisa Qualitativa , Demência/terapia , Demência/psicologiaAssuntos
Planejamento Antecipado de Cuidados , Estenose da Valva Aórtica , Implante de Prótese de Valva Cardíaca , Substituição da Valva Aórtica Transcateter , Humanos , Estados Unidos , Substituição da Valva Aórtica Transcateter/efeitos adversos , Valva Aórtica/cirurgia , Implante de Prótese de Valva Cardíaca/efeitos adversos , Estenose da Valva Aórtica/cirurgia , Estenose da Valva Aórtica/complicações , Resultado do Tratamento , Fatores de RiscoRESUMO
BACKGROUND: Dementia is a leading cause of death for older adults and is more common among persons from racial/ethnic minoritized groups, who also tend to experience more intensive end-of-life care. This retrospective cohort study compared end-of-life care in persons with and without dementia and identified dementia's moderating effects on the relationship between race/ethnicity and end-of-life care. METHODS: Administrative claims data for 463,590 Medicare fee-for-service decedents from 2016 to 2018 were analyzed. Multivariable logistic and linear regression analyses examined the association of dementia with 5 intensive and 2 quality of life-focused measures. Intensity measures included hospital admission, ICU admission, receipt of any of 5 intensive procedures (CPR, mechanical ventilation, intubation, dialysis initiation, and feeding tube insertion), hospital death, and Medicare expenditures (last 30 days of life). Quality of life measures included timely hospice care (>3 days before death) and days at home (last 6 months of life). Models were adjusted for demographic and clinical factors. RESULTS: 54% of Medicare decedents were female, 85% non-Hispanic White, 8% non-Hispanic Black, and 4% Hispanic. Overall, 51% had a dementia diagnosis claim. In adjusted models, decedents with dementia had 16%-29% lower odds of receiving intensive services (AOR hospital death: 0.71, 95% CI: 0.70-0.72; AOR hospital admission: 0.84, 95% CI: 0.83-0.86). Patients with dementia had 45% higher odds of receiving timely hospice (AOR: 1.45, 95% CI: 1.42-1.47), but spent 0.74 fewer days at home (adjusted mean: -0.74, 95% CI: (-0.98)-(-0.49)). Compared to non-Hispanic White individuals, persons from racial/ethnic minoritized groups were more likely to receive intensive services. This effect was more pronounced among persons with dementia. CONCLUSIONS: Although overall dementia was associated with fewer intensive services near death, beneficiaries from racial/ethnic groups minoritized with dementia experienced more intensive service use. Particular attention is needed to ensure care aligns with the needs and preferences of persons with dementia and from racial/ethnic minoritized groups.