High Quality End Of Life Care Research Articles

Recognizing and acknowledging end-of-life for patients with cancer - a balancing act. A qualitative study of doctors' and nurses' experiences

PurposeDoctors and nurses are central in the challenging task of end-of-life (EOL) care, and this study aims to explore and describe doctors' and nurses' experiences of recognition and acknowledgment of the end of life for patients with cancer. MethodsA qualitative, explorative research design with individual interviews was carried out based on a semi-open interview guide. A total of 6 doctors and 6 nurses working in medical or surgical departments at a Norwegian University hospital were interviewed. The interviews were analyzed using qualitative content analysis. ResultsThe study’s findings highlight that recognizing and acknowledging patients with cancer as being at end-of-life is a challenging process. Three subthemes emerged from the analysis; the significance of being experienced, the significance of organizational structures, and the significance of having a common understanding. A main theme was analyzed further and abstracted from the subthemes; Being safe to manage the balancing act of recognizing and acknowledging the end of life. ConclusionsMuch is at stake in the EOL setting, and healthcare professionals (HCP) must balance several aspects regarding EOL decisions. Striking the right balance in these situations is challenging. HCPs need a safety net through collaboration with, and support from, colleagues, supporting organizational structures and experience. Strengthening the safety net will have a clear impact on improving clinical practice to reduce futile treatment and provide high-quality EOL care for all dying patients in hospitals.

Opportunities to Improve End-of-Life Care Quality among Patients with Short Terminal Admissions

ContextLittle is known about Veterans who die during a short terminal admission, which renders them ineligible for the Department of Veterans Affairs (VA) Bereaved Family Survey. ObjectivesWe sought to describe this population and identify opportunities to improve end-of-life (EOL) care quality. MethodsRetrospective, cohort analysis of Veteran decedents who died in a VA inpatient setting between October 2018-September 2019. Veterans were dichotomized by short (<24 hours) and long (≥24 hours) terminal admissions; sociodemographics, clinical characteristics, VA and non-VA healthcare use, and EOL care quality indicators were compared. ResultsAmong 17,033 inpatient decedents, 723 (4%) had short terminal admissions. Patients with short compared to long terminal admissions were less likely to have a VA hospitalization (38% vs. 54%) in the last 90 days of life and were more likely to die in an intensive care (49% vs 21%) or acute care (27% vs 18%) unit. Patients with a short compared to long admission were about half as likely to receive hospice (33% vs 64%) or palliative care (33% vs 69%). Most patients with short admissions (76%) had a life-limiting condition (e.g., cancer, chronic obstructive pulmonary disease) and those with cancer were more likely to receive palliative care compared to those with non-cancer conditions. ConclusionVeterans with short terminal admissions are less likely to receive hospice or palliative care compared to patients with long terminal admissions. Many patients with short terminal admissions, such as those with life-limiting conditions (especially cancer), receive aspects of high-quality EOL care, however, opportunities for improvement exist.

Nurses' experience of end-of-life care for patients with COVID-19: A descriptive phenomenology study.

The mortality rates among critically ill patients with COVID-19 have been high. The national and institutional infection control policies and resource shortages caused by the pandemic led patients to undergo deaths without dignity and inevitably changed intensive care unit (ICU) end-of-life care (EOLC) practices. This study explores ICU nurses' experiences of providing EOLC for patients with COVID-19 who died. Eight nurses participated in a qualitative phenomenological study. Semi-structured interviews were conducted from July to September 2022. Colaizzi's data analysis method was used, and the following four main themes emerged: (i) only companion in the death journey; (ii) helping families prepare for death; (iii) EOLC trapped within a framework; and (iv) EOLC in retrospect. To secure high-quality EOLC in ICU, it is important to promote practical support for nurses and EOLC-related discussions/education. Technical support, such as digital communication technologies, should be reinforced to help patients and their families participate in EOLC.

Good Death and Quality of End-of-Life Care in Patients with Coexisting Cancer and Dementia: Perspective of Bereaved Families.

Patients with coexisting cancer and dementia often have complex health care needs and face challenges in achieving a good death. To evaluate good death achievement and end-of-life (EOL) care in patients with coexisting cancer and dementia from the perspective of bereaved families. Cross-sectional nationwide postal survey. Bereaved families of patients with cancer who died in hospice and palliative care units across Japan. Bereaved families completed an anonymous, self-reported questionnaire. Their perspective on achieving a good death was assessed using the Good Death Inventory (GDI) (total score: 18-126). The Revised Care Evaluation Scale-short version (CES2) was used to assess EOL care (total score: 10-60). We examined the Brief Grief Questionnaire (BGQ) (total score: 0-10) and Patient Health Questionnaire 9 (PHQ9) (total score: 0-27). Data from 670 participants were analyzed, including 83 (12.4%) bereaved families of patients with coexisting cancer and dementia. No statistical differences were observed in the total GDI score for 18 items (dementia comorbidity vs. nondementia comorbidity groups, mean ± standard deviation, respectively, 78.4 ± 17.7 vs. 80.0 ± 15.5, adjusted [adj] P = 0.186), CES2 score (49.70 ± 9.22 vs. 48.82 ± 8.40, adj P = 0.316), BGQ score (3.40 ± 2.41 vs. 4.36 ± 2.28, adj P = 0.060), and PHQ9 score (4.67 ± 4.71 vs. 5.50 ± 5.37, adj P = 0.788). GDI, CES2, BGQ, and PHQ9 scores did not differ significantly between groups, regardless of the presence of dementia in hospice and palliative care units. Patients with coexisting cancer and dementia can achieve a good death by high-quality EOL care.

PERSPECTIVES OF CAREGIVERS TO BLACK AND HISPANIC PERSONS LIVING WITH DEMENTIA (PLWD) ABOUT END-OF-LIFE COMMUNICATION

Abstract Black and Hispanic Persons Living with Dementia (PLWD) heavily rely on home healthcare to remain comfortably in their own home, even at the end of life. Despite growth in use of hospice in the U.S., research demonstrates persistent racial differences in utilization of hospice - a key indicator of high-quality end of life care. This is particularly relevant among older Black and Hispanic PLWD who experience additional burdensome interventions at the end of life which often run counter to their goals of care. This study examined perceptions of caregivers to Black and Hispanic PLWD regarding discussions with home healthcare nurses about end-of-life communication and transitions to hospice. We conducted semi-structured interviews with 19 Black and Hispanic family caregivers of PLWD. Interviews were recorded, transcribed, translated and analyzed using conventional content analysis. Results showed that Black and Hispanic caregivers of PLWD do not prioritize aggressive and burdensome care at the end of life, had low expectations of the healthcare system to support their needs and preferences at the end-of-life, and were willing to discuss and accept hospice if discussions were transparent about resources and entitlements; acknowledged the strengths of the PLWD/caregivers; involved positive and respectful communication with families during a home visit; acknowledged respect for their social communities and home environment; sat down during a home visit and recognized the role of religion at the end-of-life. Implications to improve care include incorporating family caregiver discussions, identify social determinants of health, and address the role of religion in future interventions.

KINLESSNESS, RACE, AND QUALITY OF CARE AT THE END OF LIFE: FINDINGS FROM NATIONAL HEALTH AND AGING TRENDS STUDY

Abstract Close family members provided the majority of end-of-life (EOL) caregiving. The number of older adults who are kinless (without close family/partnerships) are increasing. We therefore examined the association between kinlessness and quality of EOL care among older adults, and the moderating role of race in this association. Data were derived from the combined Round 2 to Round 11 of the National Health and Aging Trends Study. 3066 older adults who aged 65 and above and were living in the community or residential care at last interview were included in the working sample. Kinlessness was defined as lacking children and a spouse/partner. The primary outcome was quality of care at the end of life. Logistic regression models ware used to examine the association between kinlessness, race, and quality of care at the end of life. A total of 8.0% of decedents were kinless at the end of life. Kinless older adults were less likely to receive excellent EOL care than those with kin. Having at least one child or spouse/partner weakened race disparities in EOL care quality among older adults. These results point to a significant disadvantage for the minority kinless older adults, who had worse EOL care quality. Practice interventions may include a culture match between older adults and providers. Form a policy standpoint, guardianship is needed to enable kinless older adults to receive high-quality EOL care.

Bereaved parents’ perspectives on financial toxicity at end-of-life for children with cancer.

287 Background: Families of children with cancer often experience financial toxicity. However, little is known about families’ experiences with financial toxicity at end-of-life (EOL). Therefore, we qualitatively explored bereaved families’ experiences related to financial toxicity. Methods: We performed a secondary analysis of semi-structured interviews of bereaved parents about their perspectives on high-quality EOL care. The interviews were conducted with bereaved parents in California and Alabama whose child (0-21 years at the time of death) died of cancer ≥6 months before the interview. Quotes related to financial experiences were identified and then grouped thematically. Results: Fifty-five parents, representing forty-eight children were interviewed. Twenty-eight parents (51%) were recruited in California and twenty-seven (49%) in Alabama. The majority of participants were non-Hispanic White (29; 52%), fourteen (25%) were Hispanic, and twelve (22%) were Black. The most common cancer diagnoses were non-central nervous system solid tumors (18, 38%). Children died at a mean age of 11 years (SD=6 years) and a median of 4 years (IQR=2-8 years) prior to the interview. Almost all families (52, 95%) discussed themes related to financial toxicity. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as contributors to financial toxicity at EOL. Barriers to financial wellness included battling insurance companies, insufficient financial support from the hospital, and the cumulative financial toxicity of treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness by connecting them with resources and providing financial support. In some cases, finances prevented families from accessing services such as hospice care mental health support; financial constraints also affected EOL decisions. Conclusions: Almost all families discussed themes related to financial toxicity, despite not being specifically asked about financial toxicity. In particular, families were financially impacted by basic needs, medical bills, and funeral costs at the end of their child’s life. They identified numerous community and hospital-based barriers and facilitators of financial wellness. It is critical that pediatric oncology programs routinely screen for financial hardship at EOL (and into bereavement). Further research is also needed on how best to support these families’ financial struggles at this challenging time.

The impact of hospice on end-of-life expenditures and total cost of care in episodic value-based care models at a community oncology network.

228 Background: The Institute of Medicine highlighted that multiple care transitions and fragmented care delivery at the end-of-life (EOL) is a burden to patients and caregivers. Hospice care has been shown to deliver high-quality, coordinated, and comprehensive EOL care while reducing unneeded healthcare interventions and improving EOL patient experience (preference of place of death, type of EOL care). The impact of timely hospice care on Total Cost of Care (TCOC) in episodic value-based care (VBC) models and patient experience at the EOL is largely unknown. The Oncology Care Model (OCM) was a 6-year long Medicare VBC program that encouraged care transformation at Oncology practices to drive better quality of care and patient experience, while decreasing TCOC. We studied the impact of timely hospice enrollment on TCOC, EOL expenditures, and patient experience. Methods: We obtained episode level data for patients who died in an episode (decedents) during the 6-years of the OCM (July 2016 to June 2022), for 15 practices in The US Oncology Network (The Network) participating in the OCM, along with several expenditure, clinical and episodic characteristics. We evaluated utilization and experience outcomes for episodes with and without hospice. Results: Of the 26,074 decedents during the 6-year period of the OCM, 55% were enrolled in hospice for 3 or more days (Hsp), and 45% were not enrolled or enrolled in hospice for less than 3 days (NoHsp). Mean TCOC for Hsp episodes ($41,297, n = 14,240) was significantly lower (Mann Whitney U test, p-value &lt; 0.0001, significance level = 0.01) than NoHsp ($47,601, n = 11,834) episodes. TCOC comparison by expense cohort results are provided in Table 1. Median duration of hospice for Hsp episodes was 9 days. Mean ICU and inpatient spend in last 30 days of life in NoHsp group was more than 2 times the spend in Hsp group. 44% of patients in NoHsp group died in a hospital or an ICU setting, whereas 97% of patients in Hsp group died at home or in a hospice setting. Conclusions: Patients enrolled in hospice for 3 or more days had lower EOL care expenditures, fewer acute care interventions, and died at home or in hospice. Timely and proactive enrollment in hospice and coordinated EOL care can improve patient experience, but also reduce EOL costs for the healthcare system and patients. CMMI Disclaimer: The statements contained in this document are solely those of the authors and do not necessarily reflect the views or policies of CMS. The authors assume responsibility for the accuracy and completeness of the information contained in this document.[Table: see text]

"They Did Not Know How to Talk to Us and It Seems That They Didn't Care:" Narratives from Bereaved Family Members of Black Veterans.

Racial disparities in the quality of health care services, including end of life (EOL) care, are well-documented. While several explanations for these inequities have been proposed, few studies have examined the underlying mechanisms. This paper presents the results of the qualitative phase of a concurrent mixed-methods study (QUANT + QUAL) that sought to identify explanations for observed racial differences in quality of EOL care ratings using the Department of Veterans Affairs Bereaved Family Survey (BFS). The objective of the qualitative phase of the study was to understand the specific experiences that contributed to an unfavorable overall EOL quality rating on the BFS among family members of Black Veterans. We used inductive thematic analysis to code BFS open-ended items associated with 165 Black Veterans whose family member rated the overall quality of care received by the Veteran in the last month of life as "poor" or "fair." Four major themes emerged from the BFS narratives, including (1) Positive Aspects of Care, (2) Unmet Care Needs, (3) Lack of Empathy, Dignity, and Respect, and (4) Poor Communication. Additionally, some family members offered recommendations for care improvements. Our discussion includes integrated results from both our qualitative and previously reported quantitative findings that may serve as a foundation for future evidence-based interventions to improve the equitable delivery of high-quality EOL care.

Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer.

Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.

Cancer Decedents' Hospital End-of-Life Care Documentation: A Retrospective Review of Patient Records.

Objective: International standards of end-of-life care (EOLC) intend to guide the delivery of safe and high-quality EOLC. Adequately documented care is conducive to higher quality of care, but the extent to which EOLC standards are documented in hospital medical records is unknown. Assessing which EOLC standards are documented in patients' medical records can help identify areas that are performed well and areas where improvements are needed. This study assessed cancer decedents' EOLC documentation in hospital settings. Methods: Medical records of 240 cancer decedents were retrospectively evaluated. Data were collected across six Australian hospitals between 1/01/2019 and 31/12/2019. EOLC documentation related to Advance Care Planning (ACP), resuscitation planning, care of the dying person, and grief and bereavement care was reviewed. Chi-square tests assessed associations between EOLC documentation and patient characteristics, and hospital settings (specialist palliative care unit, sub-acute/rehabilitation care settings, acute care wards, and intensive care units). Results: Decedents' mean age was 75.3 years (SD 11.8), 52.0% (n = 125) were female, and 73.7% lived with other adults or carers. All patients (n = 240; 100%) had documentation for resuscitation planning, 97.6% (n = 235) for Care for the Dying Person, 40.0% for grief and bereavement care (n = 96), and 30.4% (n = 73) for ACP. Patients living with other adults or carers were less likely to have a documented ACP than those living alone or with dependents (OR 0.48; 95% CI 0.26-0.89). EOLC documentation was significantly greater in specialist palliative care settings than that in other hospital settings (P < .001). Conclusion: The process of dying is well documented among inpatients diagnosed with cancer. ACP and grief and bereavement support are not documented enough. Organizational endorsement of a clear practice framework and increased training could improve documentation of these aspects of EOLC.

Impact of COVID-19 on the End-of-Life Care of Cancer Patients Who Died in a Korean Tertiary Hospital: A Retrospective Study.

Social distancing and strict visitor restrictions at hospitals have been national policies since the onset of the coronavirus disease 2019 (COVID-19) pandemic. This has challenged the concept of a good death in comfort with the opportunity to say goodbye. Little is known about how these measures have influenced end-of-life (EOL) care among cancer patients who die in acute care hospitals. This study examined changes in the EOL care of cancer patients during the COVID-19 pandemic. We retrospectively analyzed 1,456 adult cancer patients who died in 2019 (n=752) and 2020 (n=704) at a tertiary hospital. Data on EOL care-symptom control and comfort care in an imminently dying state, preparation for death, place of death, and aggressive care in the last month-were reviewed. The 1,456 patients had a median age of 67 years, and 62.5% were men. Patients who died in 2020 were more likely to experience agitation or delirium before death (17.2% vs. 10.9%), to use inotropes/vasopressors near death (59.2% vs. 52.3%), and to receive cardiopulmonary resuscitation in their last months (16.3% vs. 12.5%) than those who died in 2019. Additionally, the number of deaths in the emergency room doubled in 2020 compared to 2019 (from 7.1% to 14.1%). This study suggests that EOL care for cancer patients who died in a tertiary hospital deteriorated during the COVID-19 pandemic. The implementation of medical care at the EOL and the preferred place of death should be discussed carefully in advance for high-quality EOL care.

End-of-Life Care for Patients With Metastatic Renal Cell Carcinoma in the Era of Oral Anticancer Therapy.

New therapies including oral anticancer agents (OAAs) have improved outcomes for patients with metastatic renal cell carcinoma (mRCC). However, little is known about the quality of end-of-life (EOL) care and systemic therapy use at EOL in patients receiving OAAs or with mRCC. We retrospectively analyzed EOL care for decedents with mRCC in two parallel cohorts: (1) patients (RCC diagnosed 2004-2015) from the University of North Carolina's Cancer Information and Population Health Resource (CIPHR) and (2) patients (diagnosed 2007-2015) from SEER-Medicare. We assessed hospice use in the last 30 days of life and existing measures of poor-quality EOL care: systemic therapy, hospital admission, intensive care unit admission, and > 1 ED visit in the last 30 days of life; hospice initiation in the last 3 days of life; and in-hospital death. Associations between OAA use, patient and provider characteristics, and EOL care were examined using multivariable logistic regression. We identified 410 decedents in the CIPHR cohort (53.4% received OAA) and 1,508 in SEER-Medicare (43.5% received OAA). Prior OAA use was associated with increased systemic therapy in the last 30 days of life in both cohorts (CIPHR: 26.5% v 11.0%; P < .001; SEER-Medicare: 23.4% v 11.7%; P < .001), increased in-hospital death in CIPHR, and increased hospice in the last 30 days in SEER-Medicare. Older patients were less likely to receive systemic therapy or be admitted in the last 30 days or die in hospital. Patients with mRCC who received OAAs and younger patients experienced more aggressive EOL care, suggesting opportunities to optimize high-quality EOL care in these groups.

Social Model Hospice Homes: Bridging the Gap in End-of-Life Care Delivery.

Background: People prefer to die at home, if given a choice. However, data show that less than half of hospice patients get to do so, as many lack the social resources needed for end-of-life (EOL) care to be supported at home. The Social Model Hospice Home (SMHh) is an emerging model of care and offers an option for individuals whose EOL care cannot be fully supported by their available social network. An SMHh is a community-supported home staffed with round the clock caregivers dedicated to closing this social gap in EOL care delivery. Objective: This study aimed to enhance and clarify the reasons for successful outcomes of the SMHh concept. Methods: This study used a qualitative descriptive approach. Twenty-three semistructured interviews were conducted with the participants. Located throughout North America, participants consisted of staff, volunteers, guests, family members of previous guests, board members, and administrators of SMHh programs. Results: Over the course of the study, five major themes were developed: (1) physical attributes of the home, (2) volunteer base, (3) attention to detail, (4) structure of accountability, and (5) practice of compassionate honesty. These themes reveal the beginning of an explanatory theory of why the SMHh concept can support the delivery of effective, high-quality EOL care. Conclusions: The result of this study substantiates SMHh as a viable alternative to traditional in-home or institution-based EOL care. As the SMHh movement develops, more research is needed to explore and understand how this emerging model of care can be implemented on a larger scale.

Goals-of-care and serious illness conversations for patients with cancer with inpatient mortality.

184 Background: Goals-of-care (GOC) and serious illness conversations are an integral part of personalized cancer care, particularly toward the end of life (EOL). Eliciting patients (pts)’ preferences and values facilitates informed decision-making throughout the disease course and enables oncologists to provide patient-centered care. Many aspects of GOC discussions and advance care planning (ACP) are inadequately understood, particularly during transitions of care when pts are hospitalized. Methods: We administered surveys to inpatient and outpatient medical oncologists of pts who died while hospitalized from 5/1/2020 to 5/31/2021. Survey items included oncologists’ knowledge of inpatient death, anticipation of pt death within six months of admission, recollection of GOC discussions taking place, and perceived barriers to GOC discussions. To better characterize EOL planning for these pts, retrospective data was collected to identify documentation of GOC discussions, advance directives, and hospice consideration in pts’ electronic health records. Results: For 75 cancer pts who died while hospitalized, 158 surveys were electronically administered with 104 responses (response rate: 66%). Pts characteristics: median age 62 (range 25-89); 63% men; 79% white; median length of hospital stay 7 days (range 1-45). Primary cancer disease type varied: 26.7% gastrointestinal, 18.7% non-small cell lung, 14.7% hematologic, 10.7% sarcoma, 9.3% genitourinary, and 19.9% other cancers. Of 104 completed surveys, responses were received from 40 inpatient and 64 outpatient oncologists. 81 oncologists (77.9%) were aware of the pt’s death prior to survey communication, 68 (65.4%) anticipated the pt’s death within six months of admission, and 67 (64.4%) recalled having a GOC discussion prior to or during the terminal hospitalization. Only 21.3% of pts had documented GOC discussions prior to admission, 33.3% had advance directives, and 22.7% had prior documentation of hospice consideration. Oncologist-reported barriers to GOC discussions included unrealistic expectations from pts or family (25%) and inability for pts to participate due to their clinical condition (15%). Oncologists commented on lack of time, lack of communication between inpatient and outpatient teams, and discordance among multiple inpatient providers as additional barriers. Conclusions: Most oncologists recalled having GOC discussions and anticipated six-month mortality for cancer pts who died while hospitalized. However, documentation of ACP and serious illness communication remained sub-optimal. Ongoing analyses are examining potential associations between patient, provider, and patient-provider relationship factors and oncologists’ survey responses. Addressing barriers to serious illness conversations across different healthcare settings is crucial to providing high-quality EOL care for cancer pts.

Dying in intensive care: An analysis of the perspectives of families and clinicians on end-of-life care

BackgroundDespite a growing body of research into end-of-life care (EOLC) in intensive care units (ICUs), few studies have concurrently explored the perspectives of families and clinicians. ObjectiveThe objective of this study was to identify the characteristics of high-quality EOLC in the ICU from family and clinician perspectives and by examining the care documented in medical records. MethodsA convergent mixed-methods study incorporating electronic health record audits (n = 20), structured interview surveys with families (n = 20), clinician surveys (n = 189), and focus groups (n = 10) was undertaken at a 30-bed, level 3 ICU at a metropolitan public adult teaching hospital in Australia. Descriptive statistics were calculated from quantitative data, and inductive thematic analysis was used to analyse qualitative data. ResultsOverall, families were very satisfied with EOLC and the quality of communication yet, felt that earlier, clearer communication that the patient was dying was required. Families spoke of the attentiveness, or lack thereof, by ICU clinicians and the opportunity to be present for the patient's death. The majority of ICU clinicians felt EOLC could be improved. Nurses highlighted communication challenges when family meetings were delayed. Some nurses expressed a lack of clarity of how to withdraw care, resulting in hesitancy to cease potentially inappropriate care, and to provide EOLC outside ICU practice norms. In many instances, observations, invasive monitoring, and interventions were documented after EOLC commenced. A lack of documented personal cares was also noted. ConclusionsThis study provides new insights into EOLC from the dual perspectives of families and clinicians. There is a need for institutional guidelines to support ICU clinicians’ EOLC practices and education to improve clinician confidence with communication.

Clinical Pearls.

Injuries from medical devices account for about 30% of all hospital-acquired pressure injuries. Although several professional organizations prioritize early identification and treatment of pressure injuries, those caused by endotracheal tubes (ETTs) continue to occur.Moser and colleagues examined the current evidence to identify the reported incidence of ETT-related pressure injuries and evaluate the effectiveness of prevention methods. They found Although further study with standardized measures in various patient populations is warranted, the authors recommend use of Anchor-Fast and nasal barrier dressings to reduce the incidence of pressure-related ETT injuries.See Article, pp 416-424Research has shown that use of a checklist during intensive care patient rounds can improve quality of care and reduce the incidence of adverse events. However, difficulties with interprofessional communication during rounds may contribute to differences in patients’ plans of care.Alves and colleagues developed and validated a checklist of care to improve interprofessional communication during rounds in a pediatric intensive care unit (PICU). After multiple phases of evaluation with many expert clinicians—physicians, nurses, and pharmacists—their findings include Findings suggest that a PICU checklist supports standardization of interprofessional rounds, improving communication between professionals from different disciplines to provide consensus on patients’ plans of care.See Article, pp 383-389Communication is a challenge for patients receiving mechanical ventilation. Although various nonverbal methods of communication are possible, these are challenging and often stressful for patients. Use of a speaking valve with patients who have a tracheostomy can restore the voice; however, information on the effectiveness of this device during invasive ventilation is limited.Sutt and colleagues evaluated the use of a speaking valve on successful communication with adult patients with a tracheostomy who are receiving mechanical ventilation. They found The authors suggest that restoring airflow to the upper airway with the speaking valve may improve patients’ progress toward decannulation. They recommend use of a speaking valve for better communication with adults receiving mechanical ventilation who have a tracheostomy.See Article, pp 411-415Critical access hospitals (CAHs) were established in the late 1990s to improve health care access for rural patients. Often CAHs have limited services and technology to care for the critically ill; however, end-of-life (EOL) care does occur in these settings. As EOL care is 1 of the 5 national nursing research priorities of the National Institute for Nursing Research, it is important to understand EOL care in CAHs.Beckstrand and colleagues surveyed nurses from 39 CAHs to understand their perceptions of the obstacles and helpful behaviors in EOL care. They found The findings show that CAH nurses believe they provide high-quality EOL care. The authors recommend further research to develop effective educational tools for CAH families.See Article, pp 375-382

Finishing Well: Compassionate Extracorporeal Membrane Oxygenation Discontinuation

Extracorporeal Membrane Oxygenation (ECMO) is associated with significant mortality. Provision of high-quality end-of-life (EOL) care for patients supported on ECMO entails specific physiological, pharmacological, and technical considerations. Limited guidance exists for clinicians on delivery of optimal EOL care on ECMO. In this article, we review the unique aspects of EOL care as they apply to ECMO support and propose a pragmatic, interdisciplinary framework for compassionate ECMO discontinuation in children and adults.The goal of compassionate ECMO discontinuation (CED) is to allow natural death from the underlying disease process while delivering high-quality EOL care to ensure a good death experience for patients and their families. The CED approach includes: 1) a family meeting to define goal-concordant EOL care and prepare families and patients for the dying process; 2) clinical preparation, including symptom management and discontinuation of other life-sustaining therapies; 3) technical aspects which necessarily vary according to patient factors and the circuit and cannulation strategy; and 4) bereavement support. The proposed CED considerations and checklist may serve as tools aiding provision of comprehensive, quality, individualized patient- and family-centered care for children and adults dying despite ECMO support. A structured CED may enhance EOL experiences for patients, family, and staff by providing a respectful and dignified death experience. Future research is required to determine feasibility and effectiveness of the framework, which must be adapted to the patient and institutional setting.

End-of-Life Care for End-stage Heart Failure Patients.

Efforts to improve end-of-life (EOL) care have generally been focused on cancer patients, but high-quality EOL care is also important for patients with other serious medical illnesses including heart failure (HF). Recent HF guidelines offer more clinical considerations for palliative care including EOL care than ever before. Because HF patients can experience rapid, unexpected clinical deterioration or sudden death throughout the disease trajectory, choosing an appropriate time to discuss issues such as advance directives or hospice can be challenging in real clinical situations. Therefore, EOL issues should be discussed early. Conversations are important for understanding patient and family expectations and developing mutually agreed goals of care. In particular, high-quality communication with patient and family through a multidisciplinary team is necessary to define patient-centered goals of care and establish treatment based on goals. Control of symptoms such as dyspnea, pain, anxiety/depression, fatigue, nausea, anorexia, and altered mental status throughout the dying process is an important issue that is often overlooked. When quality-of-life outweighs expanding quantity-of-life, the transition to EOL care should be considered. Advanced care planning including resuscitation (i.e., do-not resuscitate order), device deactivation, site for last days and bereavement support for the family should focus on ensuring a good death and be reviewed regularly. It is essential to ensure that treatment for all HF patients incorporates discussions about the overall goals of care and individual patient preferences at both the EOL and sudden changes in health status. In this review, we focus on EOL care for end-stage HF patients.

An Intensive Care Unit Team Reflects on End-of-Life Experiences With Patients and Families in Chile.

Deaths in the intensive care unit (ICU) represent an experience of suffering for patients, their families, and professionals. End-of-life (EOL) care has been added to the responsibilities of the ICU team, but the evidence supporting EOL care is scarce, and there are many barriers to implementing the clinical recommendations that do exist. To explore the experiences and perspectives of the various members of an ICU care team in Chile regarding the EOL care of their patients. A qualitative study was performed in the ICU of a high-complexity academic urban hospital. The study used purposive sampling with focus groups as a data collection method. A narrative analysis based on grounded theory was done. Four discipline-specific focus groups were conducted; participants included 8 nurses, 6 nursing assistants, 8 junior physicians, and 6 senior physicians. The main themes that emerged in the analysis were emotional impact and barriers to carrying out EOL care. The main barriers identified were cultural difficulties related to decision-making, lack of interprofessional clinical practice, and lack of effective communication. Communication difficulties within the team were described along with lack of self-efficacy for family-centered communication. These qualitative findings expose gaps in care that must be filled to achieve high-quality EOL care in the ICU. Significant emotional impact, barriers related to EOL decision-making, limited interprofessional clinical practice, and communication difficulties were the main findings cross-referenced.