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BACKGROUND: Despite the widespread implementation of telemedicine, there are limited data regarding its impact on key components of care for patients with incurable or high-risk cancer. For these patients, high-quality care requires detailed conversations regarding treatment priorities (advance care planning) and clinical care to minimize unnecessary acute care (unplanned hospitalizations). Whether telemedicine affects these outcomes relative to in-person clinic visits was examined among patients with cancer at high risk for 6-month mortality. METHODS: This retrospective cohort study included adult patients with cancer with any tumor type treated at the University of Pennsylvania who were newly identified between April 1 and December 31, 2020, to be at high risk for 6-month mortality via a validated machine learning algorithm. Separate modified Poisson regressions were used to assess the occurrence of advance care planning and unplanned hospitalizations for telemedicine as compared to in-person visits. Additional analyses were done comparing telemedicine type (video or phone) as compared to in-person clinic visits. RESULTS: The occurrence of advance care planning was similar between telemedicine and in-person visits (6.8% vs. 6.0%; adjusted risk ratio [aRR], 1.25; 95% CI, 0.92-1.69). In regard to telemedicine subtype, patients exposed to video encounters were modestly more likely to have documented advance care planning in comparison to those seen in person (7.5% vs. 6.0%; aRR, 1.48; 95% CI, 1.03-2.11). The 3-month risk for unplanned hospitalization was comparable for telemedicine compared to in-person clinic encounters (21% vs. 18%; aRR, 1.06; 95% CI, 0.81-1.38). CONCLUSIONS: In this study, care delivered by telemedicine, compared to in-person clinic visits, produced comparable rates of advance care planning conversations without increasing hospitalizations, which suggests that vulnerable patients can be managed safely by telemedicine.
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Planificación Anticipada de Atención , Neoplasias , Telemedicina , Humanos , Adulto , Estudios Retrospectivos , Hospitalización , Neoplasias/terapiaRESUMEN
BACKGROUND: End-of-life discussions for patients with advanced cancer are internationally recommended to ensure consistency of end-of-life care with patients' values. This study examined the elements of end-of-life discussions associated with end-of-life care. MATERIALS AND METHODS: We performed a prospective observational study among consecutive patients with pretreated non-small cell lung cancer after the failure of first-line chemotherapy. We asked oncologists whether they had ever discussed "prognosis," "do not attempt resuscitation," "hospice," and "preferred place of death" with a patient at baseline. The quality of life (QOL) and depressive symptoms of patients were assessed using validated questionnaires at baseline and 3 months later. The end-of-life care that patients received was investigated using medical records. Oncologists' compassion and caregivers' preferences for hospice care were also assessed using questionnaires. Multiple regression analyses were conducted to examine the association between elements of end-of-life discussions and patient-reported outcomes as well as actual end-of-life care. RESULTS: We obtained 200 valid responses at baseline, 147 valid responses 3 months later, and 145 data points for medical care at the end-of-life stage. No element of the end-of-life discussion between the patient and their oncologist was significantly associated with patients' reported outcomes or actual end-of-life care. In addition, oncologists' compassion was significantly associated with improvement in both comprehensive QOL and depressive symptoms, and caregivers' preferences for hospice care and high educational level were significantly associated with hospice death. CONCLUSION: Oncologist-patient alliances and caregivers' involvement in end-of-life discussions may be influential in achieving optimal end-of-life care.
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Carcinoma de Pulmón de Células no Pequeñas , Cuidados Paliativos al Final de la Vida , Neoplasias Pulmonares , Neoplasias , Cuidado Terminal , Humanos , Carcinoma de Pulmón de Células no Pequeñas/tratamiento farmacológico , Muerte , Neoplasias Pulmonares/tratamiento farmacológico , Calidad de Vida , Estudios ProspectivosRESUMEN
BACKGROUND: Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status. PATIENTS AND METHODS: We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care. RESULTS: With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, Pâ <â .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, Pâ <â .001). CONCLUSIONS: The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations.
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RATIONALE & OBJECTIVE: Because of the high risk of waitlist mortality and posttransplant complications, kidney transplant (KT) patients may benefit from advance care planning (ACP) and palliative care consultation (PCC). We quantified the prevalence and racial disparities in ACP and PCC among KT candidates and recipients. STUDY DESIGN: Prospective cohort study. SETTING & PARTICIPANTS: 2,575 adult KT candidates and 1,233 adult recipients (2008-2020). EXPOSURE: Race and ethnicity. OUTCOMES: All reports of ACP and PCC were abstracted from chart review. ACP was defined as patient self-report of an advance directive, presence of an advance directive in the medical record, or a documented goals-of-care conversation with a provider. PCC was defined as an ordered referral or a documented palliative care note in the medical record. ANALYTICAL APPROACH: Racial/ethnic disparities in ACP/PCC were estimated using adjusted logistic regression. RESULTS: 21.4% of KT candidates and 34.9% of recipients engaged in ACP. There were racial/ethnic disparities in ACP among KT candidates (White, 24.4%; Black, 19.1%; Hispanic, 15%; other race and ethnicity, 21.1%; P=0.008) and recipients (White, 39.5%; Black, 31.2%; Hispanic, 26.3%; other race and ethnicity, 26.6%; P=0.007). After adjustment, Black KT recipients had a 29% lower likelihood of engaging in ACP (OR, 0.71; 95% CI, 0.55-0.91) than White KT recipients. Among older (aged≥65 years) recipients, those who were Black had a lower likelihood of engaging in ACP, but there was no racial disparity among younger recipients (P=0.020 for interaction). 4.2% of KT candidates and 5.1% of KT recipients engaged in PCC; there were no racial disparities in PCC among KT candidates (White, 5.3%; Black, 3.6%; Hispanic, 2.5%; other race and ethnicity, 2.1%; P=0.13) or recipients (White, 5.5%; Black, 5.6%; Hispanic, 0.0%; other race and ethnicity, 1.3%; P = 0.21). LIMITATIONS: Generalizability may be limited to academic transplant centers. CONCLUSIONS: ACP is not common among KT patients, and minoritized transplant patients are least likely to engage in ACP; PCC is less common. Future efforts should aim to integrate ACP and PCC into the KT process. PLAIN-LANGUAGE SUMMARY: Kidney transplant (KT) candidates and recipients are at elevated risk of morbidity and mortality. They may benefit from completing a document or conversation with their palliative care provider that outlines their future health care wishes, known as advance care planning (ACP), which is a component of palliative care consultation (PCC). We wanted to determine how many KT candidates and recipients have engaged in ACP or PCC and identify potential racial disparities. We found that 21.4% of candidates and 34.9% of recipients engaged in ACP. After adjustment, Black recipients had a 29% lower likelihood of engaging in ACP. We found that 4.2% of KT candidates and 5.1% of KT recipients engaged in PCC, with no racial disparities found in PCC.
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Planificación Anticipada de Atención , Trasplante de Riñón , Cuidados Paliativos , Adulto , Humanos , Negro o Afroamericano , Estudios Prospectivos , Derivación y Consulta , Población Blanca , Hispánicos o LatinosRESUMEN
Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP's evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of "clinically meaningful" ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients' values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP's continued evolution to better serve patients and their care partners.
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Planificación Anticipada de Atención , Humanos , Directivas Anticipadas , Comunicación , Registros Electrónicos de Salud , DocumentaciónRESUMEN
BACKGROUND: Heart failure is a leading cause of death in the USA, contributing to high expenditures near the end of life. Evidence remains lacking on whether billed advance care planning changes patterns of end-of-life healthcare utilization among patients with heart failure. Large-scale claims evaluation assessing billed advance care planning and end-of-life hospitalizations among patients with heart failure can fill evidence gaps to inform health policy and clinical practice. OBJECTIVE: Assess the association between billed advance care planning delivered and Medicare beneficiaries with heart failure upon the type and quantity of healthcare utilization in the last 30 days of life. DESIGN: This retrospective cross-sectional cohort study used Medicare fee-for-service claims from 2016 to 2020. PARTICIPANTS: A total of 48,466 deceased patients diagnosed with heart failure on Medicare. MAIN MEASURES: Billed advance care planning services between the last 12 months and last 30 days of life will serve as the exposure. The outcomes are end-of-life healthcare utilization and total expenditure in inpatient, outpatient, hospice, skilled nursing facility, and home healthcare services. KEY RESULTS: In the final cohort of 48,466 patients (median [IQR] age, 83 [76-89] years; 24,838 [51.2%] women; median [IQR] Charlson Comorbidity Index score, 4 [2-5]), 4406 patients had an advance care planning encounter. Total end-of-life expenditure among patients with billed advance care planning encounters was 19% lower (95% CI, 0.77-0.84) compared to patients without. Patients with billed advance care planning encounters had 2.65 times higher odds (95% CI, 2.47-2.83) of end-of-life outpatient utilization with a 33% higher expected total outpatient expenditure (95% CI, 1.24-1.42) compared with patients without a billed advance care planning encounter. CONCLUSIONS: Billed advance care planning delivery to individuals with heart failure occurs infrequently. Prioritizing billed advance care planning delivery to these individuals may reduce total end-of-life expenditures and end-of-life inpatient expenditures through promoting use of outpatient end-of-life services, including home healthcare and hospice.
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BACKGROUND AND PURPOSE: Most neurological diseases have a chronic and progressive clinical course, with patients living for extended periods with complex healthcare needs. Evidence from other countries suggests that palliative care (PC) is insufficiently integrated in the care of these patients. This study aims to identify PC and advance care planning (ACP) knowledge and the perceived preparedness of Italian residents in neurology. METHODS: This is a cross-sectional online survey of physicians attending the 36 Italian neurology residency programmes. RESULTS: Of 854 residents, 188 (22%) participated. Their mean age was 28.4 ± 2.0 years; 49% were women; 45% were from the north, 23% from the centre and 32% from the south of Italy. Few residents (6%) reported that a teaching course in PC was part of the graduate programme, and 3% of the postgraduate programme. During their residency, 9% of participants received PC training, and 18% ACP training. Only 13% reported to have participated in the ACP process, half within their neurology residency programme. Residents considered PC support very/extremely important in all the pre-specified clinical situations, with values ranging between 78% and 96%. Over 70% of residents revealed education needs, particularly concerning ACP. CONCLUSIONS: Our data confirm the need for improving PC training in the graduate and postgraduate curriculum. This, together with collaboration and joint training of neurology and PC, is essential to improve the quality and continuity of care and respond to the complex needs of people with neurological disorders causing severe disability.
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Planificación Anticipada de Atención , Internado y Residencia , Neurología , Cuidados Paliativos , Humanos , Italia , Neurología/educación , Internado y Residencia/estadística & datos numéricos , Femenino , Planificación Anticipada de Atención/estadística & datos numéricos , Masculino , Adulto , Estudios Transversales , Encuestas y CuestionariosRESUMEN
BACKGROUND: Goals of care discussions are infrequently documented in the preoperative period. Furthermore, documentation does not consistently address what matters most to patients, although patient values (PV) are central to person-centered care. METHODS: A multidisciplinary working group was formed. An electronic note comprised of (1) topics of discussion, (2) PV, and (3) advance care planning (ACP), was created and embedded into existing note templates for Gynecologic Surgical Oncology. Surgeons and advanced practice providers (APPs) were educated to conduct and document these conversations in preoperative clinic for patients undergoing cancer surgery for a pilot period. Data were collected regarding usage of the template. Focus groups with surgeons, APPs, and patients were conducted. Qualitative analysis was performed on transcripts. RESULTS: During the pilot, 7 surgeon/APP teams utilized the template on a total of 55 notes. Average number of notes completed per surgeon was 7.8 (SD 8.5). Forty-six notes (84%) included topics of discussion, 15 (27%) included PV, 4 (7%) included ACP. Qualitative analysis of focus group transcripts revealed that clinicians and patients perceived the initiative to be useful and important, although implementation barriers were identified. CONCLUSION: Creating a surgery-specific GOC template is feasible. Iterative revisions are needed to increase utility in clinic workflows.
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Planificación de Atención al Paciente , Humanos , Proyectos Piloto , Femenino , Grupos Focales , Planificación Anticipada de Atención , Cuidados Preoperatorios , Cirujanos/psicología , Procedimientos Quirúrgicos Ginecológicos/métodos , Neoplasias de los Genitales Femeninos/cirugíaRESUMEN
With advances in medicine, HIV has evolved into a chronic condition for people living with HIV (PLWH). However, many PLWH do not engage in advance care planning (ACP), and it occurs primarily in acute situations. ACP may improve preparedness for end-of-life care and increase advance directive (AD) documentation. Searches of PubMed, PsycInfo, and CINHAL were conducted to synthesize current ACP-related randomized controlled trials on two separate populations: (1) PLWH and (2) older adults without HIV. Two articles met inclusion criteria for PLWH, and the intervention had a significant improvement in ACP engagement. For the latter population, thirteen of fourteen articles had interventions that led to statistically significant increases in ACP engagement. This review underscores the need to further investigate the best strategies to improve ACP among PLWH and provides insights from existing ACP interventions for the general population to be adapted to the needs of PLWH.
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Despite the growing need for surrogate decision-making for older adults, little is known about how surrogates make decisions and whether advance directives would change decision-making. We conducted a nationally representative experimental survey that cross-randomized cognitive impairment, gender, and characteristics of advance care planning among hospitalized older adults through a series of vignettes. Our study yielded three main findings: first, respondents were much less likely to recommend life-sustaining treatments for patients with dementia, especially after personal exposure. Second, respondents were more likely to ignore patient preferences for life-extending treatment when the patient had dementia, and choose unwanted life-extending treatments for patients without dementia. Third, in scenarios where the patient's wishes were unclear, respondents were more likely to choose treatments that matched their own preferences. These findings underscore the need for improved communication and decision-making processes for patients with cognitive impairment and highlight the importance of choosing a surrogate decision-maker with similar treatment preferences.
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Toma de Decisiones , Demencia , Prioridad del Paciente , Humanos , Demencia/terapia , Masculino , Femenino , Anciano , Directivas Anticipadas , Anciano de 80 o más Años , Persona de Mediana Edad , Apoderado , Encuestas y Cuestionarios , Planificación Anticipada de AtenciónRESUMEN
BACKGROUND: Patients ≥80 with implantable cardioverter-defibrillators (ICDs) have high rates of hospitalization and mortality, yet few have documented advance directives. We sought to determine the prevalence of advance directives in adults ≥80 years with ICDs, focusing on those with frailty and cognitive impairment. METHODS: Prospective cohort study (July 2016-May 2019) in an electrophysiology clinic. Presence of advance directives (health care proxies [HCP] and living wills [LW], or medical orders for life-sustaining treatment [MOLST]) was determined by medical record review. Frailty and cognitive impairment were screened using 4-m gait speed and Mini-Cog. RESULTS: 77 Veterans were evaluated. Mean age 84 years, 100% male, 70% frail. Overall, 52 (68%) had an HCP and 37 (48%) had a LW/MOLST. Of 67 with cognitive testing, 36% were impaired. HCP documentation was similar among frail and non-frail (69% vs. 65%). LW/MOLST was more prevalent among frail versus non-frail (52% vs. 39%). There was no difference in HCP documentation by cognitive status (67%). A LW/MOLST was more frequent for cognitively impaired versus non-impaired (50% vs. 42%). Among 19 Veterans who were frail and cognitively impaired, 14 (74%) had an HCP and 11 (58%) had a LW/MOLST. CONCLUSIONS: Most Veterans had a documented advance directive, but a significant minority did not. Simple frailty and cognitive screening tools can rapidly identify patients for whom discussion of advance directives is especially important.
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Directivas Anticipadas , Desfibriladores Implantables , Humanos , Masculino , Femenino , Anciano de 80 o más Años , Estudios Prospectivos , Disfunción Cognitiva , FragilidadRESUMEN
Most patients with advanced cancer initially express a desire to be informed of their prognosis, and prognostic discussions between patients and their oncologists can trigger the subsequent trajectory of prognostic cognitions. On the continuum of prognostic cognition, including inaccurate/accurate prognostic awareness (awareness of incurability of cancer, terminal nature of illness or life expectancy) and prognostic acceptance (accepting one's prognosis), patients' perceptions of being informed of their prognosis by oncologists and patients' coping strategy for serious medical conditions regulate prognostic cognitions. However, nearly half of the patients with advanced cancer have poor prognostic awareness, and few patients achieve prognostic acceptance. These phenomena partly act as barriers to participation in advance care planning. When oncologists engage in advance care planning conversations, they must assess the patient's prognostic cognition and readiness for advance care planning. Considering the inaccurate prognostic awareness in a non-negligible proportion of patients and that astatic patients' preferences for future treatment and care are influenced by prognostic cognition, more research on decision-making support processes for high-quality and goal-concordant end-of-life care is needed along with research of advance care planning. In addition to making decisions regarding future medical treatment and care, oncologists must engage in continuous and dynamic goal-of-care conversations with empathic communication skills and compassion from diagnosis to end-of-life care.
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Planificación Anticipada de Atención , Cognición , Neoplasias , Humanos , Neoplasias/psicología , Neoplasias/terapia , Pronóstico , Relaciones Médico-Paciente , Cuidado Terminal/psicología , Toma de Decisiones , ComunicaciónRESUMEN
PURPOSE: Advance care planning (ACP) discussions can help adolescents and young adults (AYAs) communicate their preferences to their caregivers and clinical team, yet little is known about willingness to hold conversations, content, and evolution of care preferences. We aimed to assess change in care preferences and reasons for such changes over time and examine the reasons for engaging or not engaging in ACP discussions and content of these discussions among AYAs and their caregivers. METHODS: We conducted a pilot randomized controlled trial of a novel video-based ACP tool among AYA patients aged 18-39 with advanced cancer and their caregivers. Participants were asked their care preferences at baseline, after viewing the video or hearing verbal description (post questionnaire), and again 3 months later. Three-month phone calls also queried if any ACP conversations occurred since the initial study visit. Study team notes from these phone calls were evaluated using content analysis. RESULTS: Forty-five AYAs and 40 caregivers completed the 3-month follow-up. Nearly half of AYAs and caregivers changed their care preference from post questionnaire to 3-month follow-up. Increased reflection and learning on the topic (n = 45) prompted preference change, with participants often noting the nuanced and context-specific nature of these decisions (n = 20). Most AYAs (60%) and caregivers (65%) engaged in ACP conversation(s), often with a family member. Disease-related factors (n = 8), study participation (n = 8), and a desire for shared understanding (n = 6) were common reasons for initiating discussions. Barriers included disease status (n = 14) and timing (n = 12). ACP discussions focused on both specific wishes for treatment (n = 26) and general conversations about goals and values (n = 18). CONCLUSION: AYAs and caregivers acknowledged the complexity of ACP decisions, identifying obstacles and aids for these discussions. Clinicians should support a personalized approach to ACP that captures these nuances, promoting ACP as an iterative, longitudinal, and collaborative process. TRIAL REGISTRATION: This trial was registered 10/31/2019 with ClinicalTrials.gov (Identifier: NCT0414907).
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Planificación Anticipada de Atención , Neoplasias , Humanos , Adolescente , Adulto Joven , Neoplasias/terapia , Comunicación , FamiliaRESUMEN
PURPOSE: Determining whether patients' unrealistic expectations of chemotherapy as a cure were associated with their perception of the disclosure of incurability. METHODS: This prospective study included consecutive patients with pretreated non-small cell lung cancer from four study sites. Patients and their oncologists were asked whether they perceived the disclosure of cancer incurability. Patients were also asked if they thought that chemotherapy was curative. We followed up on whether the deceased patients received specialized palliative care 14 months after their last enrollment. Multiple regression analyses were conducted to examine the association between the expectation of chemotherapy as a cure and patient/oncologist-reported perceptions of the disclosure of incurability. RESULTS: We analyzed 200 patients, 77 (38.5%) of whom had unrealistic expectations of a cure. Based on patients' perceptions, incurability was disclosed to 138 (69.0%) patients, and based on their oncologists' perceptions, incurability was disclosed to 185 (92.5%) patients (patient/oncologist agreements, κ = 0.19). Patients without a perception of the oncologist's disclosure of incurability-regardless of their oncologist's perception-were more likely to have unrealistic expectations of a cure than patients for whom both patient and oncologist perceptions were present. Patients who had unrealistic expectations of chemotherapy as a cure were shown to be significantly less likely to have received specialized palliative care, after adjusting for covariates (adjusted OR, 0.45; 95% CI, 0.23-0.91; p = .027). CONCLUSION: Oncologists' disclosure of incurability was not fully recognized by patients, and expectations of chemotherapy as a cure were associated with patients' perception of the disclosure of incurability.
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Carcinoma de Pulmón de Células no Pequeñas , Neoplasias Pulmonares , Cuidados Paliativos , Humanos , Masculino , Carcinoma de Pulmón de Células no Pequeñas/tratamiento farmacológico , Carcinoma de Pulmón de Células no Pequeñas/psicología , Carcinoma de Pulmón de Células no Pequeñas/terapia , Femenino , Neoplasias Pulmonares/psicología , Neoplasias Pulmonares/tratamiento farmacológico , Neoplasias Pulmonares/terapia , Estudios Prospectivos , Persona de Mediana Edad , Anciano , Cuidados Paliativos/psicología , Cuidados Paliativos/métodos , Relaciones Médico-Paciente , Anciano de 80 o más Años , Análisis de Regresión , Revelación de la Verdad , Adulto , Antineoplásicos/uso terapéuticoRESUMEN
PURPOSE: The objective of this study is to identify the beliefs, values, perceptions, and experiences of medical oncology, radiation oncology, and clinical haematology professionals about the advance care planning process. METHODS: Qualitative exploratory study. There were four focus groups with 14 nurses and 12 physicians (eight medical oncology, one radiation oncology, three haematology). A reflexive thematic analysis of the data obtained was performed. RESULTS: We identified 20 thematic categories, which we grouped into four themes: lack of knowledge about advance care planning; perception of the advance care planning process: knowledge acquired from practice; barriers and facilitators for the implementation of advance care planning; and communication as a key aspect of advance care planning. CONCLUSIONS: The participants valued advance care planning as an early intervention tool that promotes autonomy. They perceived difficulties in approaching planning due to lack of knowledge, training, and time. They identified the therapeutic relationship with the person, the participation of the person's loved ones, teamwork, and communication skills as essential to ensuring the quality of the process. Finally, they recognised that palliative care professionals provide added value in supporting planning processes.
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Planificación Anticipada de Atención , Hematología , Humanos , Investigación Cualitativa , Grupos Focales , ComunicaciónRESUMEN
BACKGROUND: Advance care planning (ACP) aims to ensure that people with chronic or advanced disease receive medical care that is consistent with their values and preferences. However, professionals may find it challenging to engage these patients in conversations about the end of life. We sought to develop a pictorial tool to facilitate communication around ACP. METHODS: This was a three-phase study. In phase 1, we used the nominal group and Delphi techniques to achieve expert consensus regarding the conceptual content of the tool. In phase 2, a professional cartoonist was commissioned to create a series of cartoons representing each of the content areas resulting from the Delphi process. The pictorial tool was then administered (phase 3) with a sample of individuals with advanced/chronic disease to explore whether the cartoons were easy to understand and conveyed the intended message. RESULTS: Following a three-round Delphi process, consensus was reached regarding a set of 12 key content areas that should be considered in the context of an ACP interview. The cartoons created to represent each of the 12 areas were then reviewed and ordered so as to reflect the typical stages of an end-of-life care interview. After administering the pictorial tool with 24 frail older adults with advanced/chronic disease, changes were made to 9 of the 12 cartoons. CONCLUSIONS: The new pictorial tool comprises a set of 12 cartoons that can guide professionals as they seek to engage frail older adults with advanced/chronic disease in conversations about the end of life and ACP.
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Planificación Anticipada de Atención , Comunicación , Técnica Delphi , Humanos , Femenino , Anciano , Masculino , Anciano de 80 o más Años , Consenso , Cuidado Terminal/métodos , Enfermedad Crónica/terapia , Anciano Frágil , Dibujos Animados como AsuntoRESUMEN
OBJECTIVES: To investigate if a prospective feedback loop that flags older patients at risk of death can reduce non-beneficial treatment at end of life. DESIGN: Prospective stepped-wedge cluster randomised trial with usual care and intervention phases. SETTING: Three large tertiary public hospitals in south-east Queensland, Australia. PARTICIPANTS: 14 clinical teams were recruited across the three hospitals. Teams were recruited based on a consistent history of admitting patients aged 75+ years, and needed a nominated lead specialist consultant. Under the care of these teams, there were 4,268 patients (median age 84 years) who were potentially near the end of life and flagged at risk of non-beneficial treatment. INTERVENTION: The intervention notified clinicians of patients under their care determined as at-risk of non-beneficial treatment. There were two notification flags: a real-time notification and an email sent to clinicians about the at-risk patients at the end of each screening day. The nudge intervention ran for 16-35 weeks across the three hospitals. MAIN OUTCOME MEASURES: The primary outcome was the proportion of patients with one or more intensive care unit (ICU) admissions. The secondary outcomes examined times from patients being flagged at-risk. RESULTS: There was no improvement in the primary outcome of reduced ICU admissions (mean probability difference [intervention minus usual care] = -0.01, 95% confidence interval -0.08 to 0.01). There were no differences for the times to death, discharge, or medical emergency call. There was a reduction in the probability of re-admission to hospital during the intervention phase (mean probability difference -0.08, 95% confidence interval -0.13 to -0.03). CONCLUSIONS: This nudge intervention was not sufficient to reduce the trial's non-beneficial treatment outcomes in older hospital patients. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry, ACTRN12619000675123 (registered 6 May 2019).
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Cuidado Terminal , Humanos , Masculino , Anciano de 80 o más Años , Femenino , Anciano , Cuidado Terminal/métodos , Estudios Prospectivos , Queensland , Unidades de Cuidados Intensivos , Inutilidad Médica , Retroalimentación , Admisión del Paciente , Factores de Edad , Medición de RiesgoRESUMEN
INTRODUCTION: Advance care planning (ACP) aims to create conditions for more person-centred care. We aimed to explore variations in person-centred care discussions and treatment-centred care discussions within ACP conversations in the Multidisciplinary Timely Undertaken Advance Care Planning (MUTUAL) intervention and how person-centred care discussions could be encouraged. The MUTUAL intervention consists of the following: (i) timely patient selection, (ii) the patient and healthcare professionals preparing for the conversation, (iii) a scripted ACP conversation in a multidisciplinary setting and (iv) documentation. METHODS: We conducted a narrative analysis of ACP conversations. A narrative summary template was created and used to analyse 18 audio-recordings. RESULTS: We noticed variations in person-centred and treatment-centred focus within the ACP conversations. We identified three important strategies that facilitated person-centred care discussions within ACP conversations. First, healthcare professionals' acceptance that ACP is an individual process. We believe it is important that healthcare professionals recognise and accept where the patient is in his or her individual ACP process; not making decisions right away can also be part of a decisional process. Secondly, exploring the underlying motivation for treatment wishes can give insights into patient's wishes, values and needs. Lastly, healthcare professionals who demonstrated an adaptive, curious and engaged attitude throughout the ACP process achieved more person-centred ACP conversations. This coincided with elaborating on the patient's emotions, fears and worries. CONCLUSION: Person-centred and treatment-centred focus varied within the ACP conversations in the MUTUAL intervention. Certain strategies by healthcare professionals facilitated a more person-centred focus.
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Planificación Anticipada de Atención , Masculino , Femenino , Humanos , Personal de Salud , Toma de Decisiones , Emociones , ComunicaciónRESUMEN
BACKGROUND AND OBJECTIVE: The identification of factors associated with long-term prognosis after community-onset pneumonia in elderly patients should be considered when initiating advance care planning (ACP). We aimed to identify these factors and develop a prediction score model. METHODS: Patients aged 65 years and older, who were hospitalized for pneumonia at nine collaborating institutions, were included. The prognosis of patients 180 days after the completion of antimicrobial treatment for pneumonia was prospectively collected. RESULTS: The total number of analysable cases was 399, excluding 7 outliers and 42 cases with missing data or unknown prognosis. These cases were randomly divided in an 8:2 ratio for score development and testing. The median age was 82 years, and there were 68 (17%) deaths. A multivariate analysis showed that significant factors were performance status (PS) ≥2 (Odds ratio [OR], 11.78), hypoalbuminemia ≤2.5 g/dL (OR, 5.28) and dementia (OR, 3.15), while age and detection of antimicrobial-resistant bacteria were not associated with prognosis. A scoring model was then developed with PS ≥2, Alb ≤2.5, and dementia providing scores of 2, 1 and 1 each, respectively, for a total of 4. The area under the curve was 0.8504, and the sensitivity and specificity were 94.6% and 61.7% at the cutoff of 2, respectively. In the test cases, the sensitivity and specificity were 91.7% and 63.1%, respectively, at a cutoff value of 2. CONCLUSION: Patients meeting this score should be considered near the end of life, and the initiation of ACP practices should be considered.
Asunto(s)
Infecciones Comunitarias Adquiridas , Neumonía , Humanos , Femenino , Masculino , Infecciones Comunitarias Adquiridas/microbiología , Infecciones Comunitarias Adquiridas/diagnóstico , Infecciones Comunitarias Adquiridas/tratamiento farmacológico , Pronóstico , Anciano , Anciano de 80 o más Años , Neumonía/diagnóstico , Neumonía/microbiología , Neumonía/tratamiento farmacológico , Neumonía/mortalidad , Estudios Prospectivos , Factores de Riesgo , Antibacterianos/uso terapéutico , Valor Predictivo de las Pruebas , Demencia/diagnóstico , Demencia/epidemiologíaRESUMEN
BACKGROUND: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. AIM: To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families. DESIGN: A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews. DATA SOURCES: Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023. RESULTS: The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation. CONCLUSIONS: Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group.