Beyond Idiopathic Pulmonary Fibrosis Diagnosis: Multidisciplinary Care With an Early Integrated Palliative Approach Is Associated With a Decrease in Acute Care Utilization and Hospital Deaths

Context

Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable interstitial lung disease with heavy symptom burden and poor quality of life. The last year of life is characterized by increased acute care utilization and hospital deaths. Clinical guidelines recommend early integration of palliative care but are rarely implemented. In 2012, we reorganized our clinic into a multidisciplinary team comprising two pulmonologists (expertise in interstitial lung disease and palliative respiratory care, respectively), nurse, respiratory therapist, physiotherapist, and a dietitian. We adopted an early integrated palliative approach with a focus on early symptom management and advance care planning starting at the first clinic visit. We designed a Multidisciplinary collaborative (MDC) care model with emphasis on community-based care to manage patients in their homes and support caregivers.

Impact of Palliative Care on Quality of End-of-Life Care Among Brazilian Patients With Advanced Cancers

ContextMany patients with advanced cancer experience aggressive care during the end of life (EOL). Several studies have evaluated the benefits of palliative care (PC) on the reduction of aggressive measures; however, limited data are available about their benefit in Brazilian patients.ObjectivesTo evaluate the impact of PC on the reduction of aggressive measures at the EOL.MethodsLongitudinal study analyzed retrospectively medical records of patients who died of advanced cancer from 2010 to 2014. Data were obtained on PC referral and five quality-of-care indicators at the EOL; that is, emergency department visits, hospital admission, intensive care unit admission, use of systemic antineoplastic therapy within the last 30 days of life, and place of death in hospital as well as the use of a composite score for aggressiveness of care.ResultsOf the 1284 patients, 832 (65%) received some aggressive measures in EOL care. Over the years, there was a reduction in the aggressiveness of care (score = 0: 33.2% vs. 47.1%; P < 0.001). Patients not seen by PC received greater aggressive care compared with patients consulted by PC (score ≥1: 87.4% vs. 52.8%; P < 0.001). Early PC was associated with less chemotherapy (P = 0.001) and fewer emergency department visits (P = 0.004) in the last 30 days of life, when compared with late PC. However, there were no demonstrated benefits to significantly reduce the composite score at EOL care aggressiveness.ConclusionPatients with an advanced cancer consultation by PC staff received less aggressive care at the EOL when compared with patients without PC.     

Implementing and Evaluating a Four-Year Integrated End-of-Life Care Curriculum for Medical Students

Problem: Meeting the needs of patients with life-limiting and terminal illness requires effectively trained physicians in all specialties to provide skillful and compassionate care. Despite mandates for end-of-life (EoL) care education, graduating medical students do not consistently feel prepared to provide this care. Intervention: We have developed a longitudinal, integrated, and developmental 4-year curriculum in EoL care. The curriculum's purpose is to teach basic competencies in EoL care. A variety of teaching strategies emphasize experiential, skill-building activities with special attention to student self-reflection. In addition, we have incorporated interprofessional learning and education on the spiritual and cultural aspects of care. We created blended learning strategies combining interactive online modules with live workshops that promote flexibility, adaptability, and interprofessional learning opportunities. Context: The curriculum was implemented and evaluated in the 4-year program of studies at Yale School of Medicine. Outcome: A mixed-method evaluation of the curriculum included reviews of student written reflections and questionnaires, graduating student surveys, and demonstration of 4th-year students’ competency in palliative care with an observed structured clinical examination (OSCE). These evaluations demonstrate significant improvements in students’ self-reported preparedness in EoL care and perceptions of the adequacy in their instruction in EoL and palliative care, as well as competency in primary palliative care in a newly developed OSCE. Lessons Learned: A 4-year longitudinal integrated curriculum enhances students’ skills and preparedness in important aspects of EoL care. As faculty resources, clinical sites, and curricular structure vary by institution, proven and adaptable educational strategies as described in this article may be useful to address the mandate to improve EoL care education. Teaching strategies and curricular components and design as just described can be adapted to other programs.     

Factors Associated With Symptom Relief in End-of-Life Care in Residential Care Homes: A National Register-Based Study

Context

Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life.

间质性肺疾病患者生活质量状况及相关因素分析

目的探讨间质性肺疾病(interstitial lung disease,ILD)患者的生活质量及其相关因素。方法 2013年1月至2014年8月便利选取128例ILD患者作为研究对象,应用特发性肺纤维化患者生活质量量表(a tool to assess quality of life in idiopathic pulmonary fibrosis,ATAQ-IPF)、呼吸困难量表(modified Medical Research Council dyspnea scale,mMRC)进行测评,并对不同人口学特征的ILD患者的生活质量进行单因素分析。结果 ILD患者的生活质量总分为(259.34±47.088)分,得分率(均分/满分)为0.701,各维度中受损最严重的是社会角色维度,其次为规划维度和呼吸困难维度,受损最轻的是人际关系维度。单因素分析发现,不同病种、有无配偶及不同呼吸困难程度的ILD患者之间,生活质量差异存在统计学意义(均P0.05);年龄、体质指数、吸烟指数、病程与患者的生活质量无相关性(均P0.05)。结论 ILD患者的生活质量受到损害,医护人员应重视患者的综合治疗与评估,以提高其生活质量。     

Health Care Utilization and End-of-Life Care Outcomes for Patients With Decompensated Cirrhosis Based on Transplant Candidacy

ContextPatients with decompensated cirrhosis have high rates of health care utilization at end of life (EOL). However, the impact of transplant candidacy on intensity of EOL care is currently unknown.ObjectivesTo assess the relationship between transplant candidacy and intensity of EOL care in the last year of life in an ambulatory cohort of patients with decompensated cirrhosis.MethodsWe performed a retrospective analysis of 230 patients with decompensated cirrhosis who were evaluated for liver transplantation in a large health care system between 1/1/2010 and 12/31/2017 and died by 6/20/2018. We compared health care utilization in the last year of life and EOL care outcomes between transplant-listed (n = 133) and nonlisted (n = 97) patients. We examined predictors of palliative and hospice care utilization using multivariate logistic regression.ResultsDuring the last year of life, patients had a median of three hospitalizations (IQR 2–5) and spent a median of 31 days (IQR 16–49) in the hospital. In all, 80% of patients died in the hospital, with 70% dying in the intensive care unit. The majority (70.0%) received a life-sustaining procedure (mechanical ventilation, renal replacement therapy, or cardiopulmonary resuscitation) during their terminal hospitalization, which did not differ between transplant-listed and nonlisted patients (74.4% vs. 63.9%, P = 0.09). Transplant-listed patients had lower odds of receiving specialty palliative care (odds ratio 0.43, P = 0.005). Patients with hepatocellular carcinoma had higher odds of receiving hospice care (odds ratio 2.03, P = 0.049).ConclusionPatients with decompensated cirrhosis had intensive health care utilization during their last year of life regardless of transplant candidacy. Further work is needed to optimize their EOL care, particularly for patients who are ineligible for transplantation.     

特发性间质性肺炎经支气管镜肺活检组织中PDGF的表达及其意义

目的通过了解PDGF在IIP肺组织中的表达和分布,探讨PDGF在不同类型特发性间质性肺炎发病中的作用及其意义。方法选择较典型的IIP经支气管经肺活检组织(蜡块)重新切片,并通过免疫组织化学方法观察了PDGF在IIPs不同组织类型肺组织中的表达。结果 PDGF-A在各组中表达强度依次是:UIPAIPDIPRBILDCOPLIPNSIP正常对照组。PDGF的表达水平①所有试验组均高于正常对照组(P0.05)。②UIP与AIP组高于NSIP、DIP、RBILD、COP、LIP、正常对照组(P0.05),UIP与AIP组比较表达强度差异无显著性(P0.05)③NSIP、DIP、RBILD、COP、LIP各组间比较表达强度差异无显著性(P0.05)。结论①PDGF在IIP肺组织中的表达高于正常肺组织。②PDGF在不同类型IIP肺组织中的表达强度不同。③UIP和AIP肺组织中的表达强度明显高于其他类型。     

Patterns and Outcomes of Care in Children With Advanced Heart Disease Receiving Palliative Care Consultation

Context

Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).

Clinical Trial Participation as Part of End-of-Life Cancer Care: Associations With Medical Care and Quality of Life Near Death

ContextClinical trials are a common therapeutic option for patients with advanced incurable cancer.ObjectivesTo examine the associations between trial participation and end-of-life (EOL) outcomes, including aggressive care and quality of life (QOL).MethodsCoping with Cancer, a multicenter prospective cohort study of patients with metastatic cancer, progressed after at least first-line chemotherapy. Baseline chart review documented clinical trial participation. Baseline interviews assessed psychosocial characteristics and EOL preferences. Caregiver interview and chart review assessed medical care and QOL near death. The primary outcome was aggressive EOL care (ventilation, resuscitation, or intensive care unit admission in last week of life). Propensity score weighting balanced patient characteristics that differed by trial participation, including care preferences and EOL discussion. Propensity score–weighted regression models estimated the effect of trial participation on outcomes.ResultsOf 352 patients followed to death, 37 were enrolled in a clinical trial at baseline. In propensity score–weighted analyses, trial participation was significantly associated with aggressive EOL care (21.6% vs. 12.0%, adjusted odds ratio [AOR] 2.04, 95% confidence interval [CI] 1.00–4.15), late hospice enrollment (51.4% vs. 42.2%, AOR 1.96, 95% CI 1.10–3.50), hospital death (48.6% vs. 25.7%, AOR 2.74, 95% CI 1.37–5.47), intensive care unit death (16.2% vs. 6.3%, AOR 3.53, 95% CI 1.29–9.65), and inferior QOL near death (least squares mean 5.93 vs. 7.69, P < 0.001). Controlling for EOL care, trial enrollment was no longer associated with QOL near death (P = 0.342).ConclusionClinical trial participation is associated with aggressive EOL care. Aggressive EOL care appears to explain the association between trial participation and QOL near death.     

Impact of Opioid Therapy on Sleep and Respiratory Patterns in Adults With Advanced Cancer Receiving Palliative Care

Context

In advanced cancer, abnormal sleep patterns may contribute to poor quality of life, but the impact of opioid-related sleep disorders has not been explored in detail in these patients.

Dying With Dementia: Symptoms,Treatment, and Quality of Life in the Last Week of Life

ContextBurdensome symptoms present frequently in dementia at the end of life, but we know little about the symptom control provided, such as type and dosage of medication.ObjectivesTo investigate symptom prevalence and prescribed treatment, explore associations with quality of life (QOL) in the last week of life, and examine symptom prevalence by cause of death of nursing home residents with dementia.MethodsWithin two weeks after death, physicians completed questionnaires about symptoms and treatment in the last week for 330 nursing home residents with dementia in the Dutch End of Life in Dementia study (2007–2011). We used linear regression to assess associations with QOL, measured by the Quality of Life in Late-Stage Dementia scale. Causes of death were abstracted from death certificates.ResultsPain was the most common symptom (52%), followed by agitation (35%) and shortness of breath (35%). Pain and shortness of breath were mostly treated with opioids and agitation mainly with anxiolytics. At the day of death, 77% received opioids, with a median of 90 mg/24 hours (oral equivalents), and 21% received palliative sedation. Pain and agitation were associated with a lower QOL. Death from respiratory infection was associated with the largest symptom burden.ConclusionSymptoms are common in dementia at the end of life, despite the large majority of residents receiving opioids. Dosages may be suboptimal with regard to weighing of effects and side effects. Future research may employ observation on a day-to-day basis to better assess effectiveness of symptom control and possible side effects.     

皮肌炎伴间质性肺炎患者35例的护理体会

目的探讨皮肌炎伴间质性肺炎患者的护理方法。方法对35例皮肌炎伴间质性肺炎住院患者进行系统、全面的观察与护理。结果本组3例患者因呼吸衰竭死亡,2例患者因家庭原因放弃治疗,其余患者好转出院。结论结合患者的具体病情,对皮肌炎伴间质性肺炎患者采取积极有效的护理措施,是患者康复和取得良好护理效果的关键。     

Palliative Care in India

Palliative care in India is in a relatively early stage of development and consequently faces numerous problems. The extent of problems relating to the lack of such care is not well described for cancer or nonmalignant diseases. Opioid availability is seriously limited. Many inexpensive drugs are not readily available and some very expensive drugs are often prescribed, adding to the patients' burden. Enormous psychosocial needs often are neglected in busy clinics. The government's palliative care policy has not been implemented. There are clear needs for improvement in multiple areas that must be addressed as new services develop. A system based on outpatient care has proven cost-effective, empowering families to care for patients at home. Whenever possible, inpatient facility and home visits should be available for those who need them. Some measures of quality assurance should develop concurrent with growth of the palliative care movement. Successes and problems in the development of palliative care in India are discussed.     

Standardizing Communications Improves Use of Palliative Care in Patients With Stroke

Patients who have sustained a severe stroke have immediate palliative care needs, and poor communication is a gap in quality that increases length of stay (LOS) and costs, which decreases efficient resource utilization. To standardize communication between families and treatment teams in the intensive care unit (ICU) and demonstrate improvement in LOS and costs, a communication bundle was prospectively implemented in 22 patients and compared against a retrospective control arm of 22 patients. The intervention group demonstrated significant improvement in median ICU and hospital LOS and ICU costs. Standardizing communication significantly improved resource utilization in severe stroke patients.     

Racial Disparities in End-of-Life Care Between Black and White Adults With Metastatic Cancer

ContextThe comfort of patients with cancer near the end of life (EOL) is often undermined by unnecessary and burdensome treatments. There is a need for more research examining racial disparities in EOL care, especially in regions with a history of racial discrimination.ObjectivesTo examine whether black adults received more burdensome EOL care than white adults in a population-based data set of cancer decedents in Louisiana, a state with a history of slavery and long-standing racial disparities.MethodsThis was a retrospective analysis of EOL care from the Research Action for Health Network (REACHnet), a regional Patient-Centered Outcomes Research Institute-funded database. The sample consisted of 875 white and 415 black patients with metastatic cancer who died in Louisiana from 2011 to 2017. We used logistic regression to examine whether race was associated with five indicators of burdensome care in the last 30 days of life: chemotherapy use, inpatient hospitalization, intensive care unit admission, emergency department (ED) admission, and mechanical ventilation.ResultsMost patients (85.0%) received at least one indicator of burdensome care: hospitalization (76.5%), intensive care unit admission (44.1%), chemotherapy (29.1%), mechanical ventilation (23.0%), and ED admission (18.3%). Odds ratios (ORs) indicated that black individuals were more likely than white individuals to be hospitalized (OR = 1.66; 95% CI = 1.21–2.28; P = 0.002) or admitted to the ED (OR = 1.57; 95% CI = 1.16–2.13; P = 0.004) during their last month of life.ConclusionFindings have implications for informing health care decision making near the EOL for patients, families, and clinicians, especially in regions with a history of racial discrimination and disparities.     

End-of-Life Culture Change Practices in U.S. Nursing Homes in 2016/2017

Context

The nursing home (NH) culture change (CC) movement, which emphasizes person-centered care, is particularly relevant to meeting the unique needs of residents near the end of life.