The Growth of Palliative Practice and End of Life Care in an Academic Teaching Intensive Care Unit

Objective Dying in the intensive care unit (ICU) has changed over the last twenty years due to increased utilization of palliative care. We sought to examine how palliative medicine (PM) integration into critical care medicine has changed outcomes in end of life including the utilization of do not resuscitate (no cardiopulmonary resuscitation but continue treatment) and comfort care orders (No resuscitation, only comfort medication). Design: Retrospective observational review of critical care patients who died during admission between two decades, 2008 to 09 and 2018 to 19. Setting: Single urban tertiary care academic medical center in Washington, D.C. Patients: Adult patients who were treated in any ICU during the admission which they died. Interventions and Measurements We sought to measure PM involvement across the two decades and its association with end of life care including do not resuscitate (DNR) and comfort care (CC) orders. Main Results: 571 cases were analyzed. Mean age was 65 ± 15, 46% were female. In univariate analysis significantly more patients received PM in 2018 to 19 (40% vs. 27%, p = .002). DNR status increased significantly over time (74% to 84%, p = .002) and was significantly more common in patients who were receiving PM (96% vs. 72%, p < 0.001). CC also increased over time (56% to 70%, p = <0.001), and was more common in PM patients (87% vs. 53%, p < 0.001). Death in the ICU decreased significantly over time (94% to 86%, p = .002) and was significantly lower in PM patients (76% vs. 96%, p < 0.001). The adjusted odds of getting CC for those receiving versus those not receiving PM were 14.51 (5.49-38.36, p < 0.001) in 2008 to 09 versus 3.89 (2.27-6.68, p < 0.001) in 2018 to 19. Conclusion: PM involvement increased significantly across a decade in our ICU and was significantly associated with incidence of DNR and CC orders as well as the decreased incidence of dying in the ICU. The increase in DNR and CC orders independent of PM over the past decade reflect intensivists delivering PM services.

Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing

Background In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor. Methods This DA is developed following the International Patient Decision Aid Standards. The Dutch treatment guideline and the Dutch recommendations for prenatal counseling in extreme prematurity were used as basis. Development of the first prototype was done by expert clinicians and patients, further improvements were done after alpha testing with involved clinicians, patients and other experts (n = 12), and beta testing with non-involved clinicians and patients (n = 15). Results The final version includes information, probabilities and figures depending on users’ preferences. Furthermore, it elicits patient values and provides guidance to aid parents and professionals in making a decision for either early intensive care or palliative comfort care in threatening extreme premature delivery. Conclusion A decision aid was developed to support prenatal counseling regarding the decision on early intensive care versus palliative comfort care in case of extreme premature delivery at 24 weeks gestation. It was well accepted by parents and healthcare professionals. Our multimedia, digital DA is openly available online to support prenatal counseling and personalized, shared decision-making in imminent extreme premature labor.

Cardiac Interventions for Patients With Trisomy 13 and Trisomy 18: Experience, Ethical Issues, Communication, and the Case for Individualized Family-Centered Care

This report is informed by the themes of the session Trisomy 13/18, Exploring the Changing Landscape of Interventions at NeoHeart 2020—The Fifth International Conference of the Neonatal Heart Society. The faculty reviewed the present evidence in the management of patients and the support of families in the setting of trisomy 13 and trisomy 18 with congenital heart disease. Until recently medical professionals were taught that T13 and 18 were “lethal conditions” that were “incompatible with life” for which measures to prolong life are therefore ethically questionable and likely futile. While the medical literature painted one picture, family support groups shared stories of the long-term survival of children who displayed happiness and brought joy along with challenges to families. Data generated from such care shows that surgery can, in some cases, prolong survival and increase the likelihood of time at home. The authors caution against a change from never performing heart surgery to always—we suggest that the pendulum of intervention find a balanced position where all therapies including comfort care and surgery can be reviewed. Families and clinicians should typically be supported and empowered to define the best care for their children and patients. Key concepts in communication and case vignettes are reviewed including the importance of supportive relationships and the fact that palliative care may serve as an additional layer of support for decision-making and quality of life interventions. While cardiac surgery may be beneficial in some cases, surgery should not be the primary focus of initial family education and support.

Impact of Neonatal Outcome on Language Used to Describe Periviable Birth Experience

Motivation and Purpose: The experience of giving birth to a periviable neonate between 22-25 weeks gestation varies greatly among women depending on numerous factors. Studying periviable narrative experiences will allow us to isolate those factors that create a more positive experience, even in the instance of a negative neonatal outcome (infant death). Results may be used to advise future caregiving approaches so they may be tailored to the needs of women in these situations. This study aimed to qualitatively assess the extent of the relationship between neonatal outcome and the language used by women and their important others (IOs) to describe periviable birth experience three months postpartum. Method: A semi-structured interview guide was used to investigate participants’ perceptions of their delivery experience and subsequent NICU experience, if applicable, at three months postpartum. Interviews were transcribed verbatim and coded for themes by three investigators. Conventional content analysis was conducted using NVivo 12. Results: Twenty-three women and twelve IOs were recruited at two hospitals between 2016 and 2018. Women and IOs who experienced infant death negatively described their delivery experience if they also negatively described healthcare team (HCT) interactions, including providers’ communication, clinical judgement, and personality traits. Specifically, participants with overall negative birth experiences described not understanding various clinical decisions and felt uninformed on topics pertinent to their or their infant’s care. Alternatively, women and IOs who experienced infant death who positively described their delivery experience also positively described NICU care (including HCT interactions) and infant death experience (comfort care). These results highlight the impact of HCT interactions and communication on a patient’s perception of delivery despite a negative neonatal outcome. Conclusion: These findings could suggest that improvements in communication and information dissemination from the HCT may have the ability to improve a patient’s periviable birth experience despite a negative neonatal outcome.

Impact of Neonatal Outcome on Language Used to Describe Periviable Birth Experience

Motivation and Purpose: The experience of giving birth to a periviable neonate between 22-25 weeks gestation varies greatly among women depending on numerous factors. Studying periviable narrative experiences will allow us to isolate those factors that create a more positive experience, even in the instance of a negative neonatal outcome (infant death). Results may be used to advise future caregiving approaches so they may be tailored to the needs of women in these situations. This study aimed to qualitatively assess the extent of the relationship between neonatal outcome and the language used by women and their important others (IOs) to describe periviable birth experience three months postpartum. Method: A semi-structured interview guide was used to investigate participants’ perceptions of their delivery experience and subsequent NICU experience, if applicable, at three months postpartum. Interviews were transcribed verbatim and coded for themes by three investigators. Conventional content analysis was conducted using NVivo 12. Results: Twenty-three women and twelve IOs were recruited at two hospitals between 2016 and 2018. Women and IOs who experienced infant death negatively described their delivery experience if they also negatively described healthcare team (HCT) interactions, including providers’ communication, clinical judgement, and personality traits. Specifically, participants with overall negative birth experiences described not understanding various clinical decisions and felt uninformed on topics pertinent to their or their infant’s care. Alternatively, women and IOs who experienced infant death who positively described their delivery experience also positively described NICU care (including HCT interactions) and infant death experience (comfort care). These results highlight the impact of HCT interactions and communication on a patient’s perception of delivery despite a negative neonatal outcome. Conclusion: These findings could suggest that improvements in communication and information dissemination from the HCT may have the ability to improve a patient’s periviable birth experience despite a negative neonatal outcome.

Patient–physician conversations about life-sustaining treatment: Treatment preferences and participant assessments

Objective In 2019, the Danish parliament issued legislation requiring Danish physicians to clarify and honor seriously ill patients’ treatment preferences. The American POLST (Physician Orders for Life-Sustaining Treatment) document could be a valuable model for this process. The aim of the study was to examine patients' preferences for life-sustaining treatment and participant assessment of a Danish POLST form. Methods The study is a prospective intervention based on a pilot-tested Danish POLST form. Participant assessments were examined using questionnaire surveys. Patients with serious illness and/or frailty from seven hospital wards, two general practitioners, and four nursing homes were included. The patients and their physicians completed the POLST form based on a process of shared decision-making. Results A total of 95 patients (aged 41–95) participated. Hereof, 88% declined cardiopulmonary resuscitation, 83% preferred limited medical interventions or comfort care, and 74% did not require artificial nutrition. The preferences were similar within age groups, genders, and locations, but with a tendency toward younger patients being more in favor of full treatment and nursing home residents being more in favor of cardiopulmonary resuscitation. Questionnaire response rates were 69% (66/95) for patients, 79% (22/28) for physicians, and 31% (9/29) for nurses. Hereof, the majority of patients, physicians, and nurses found that the POLST form was usable for conversations and decision-making about life-sustaining treatment to either a high or very high degree. Significance of results The majority of seriously ill patients did not want a resuscitation attempt and opted for selected treatments. The majority of participants found that the Danish POLST was usable for conversations and decisions about life-sustaining treatment to either a high or a very high degree, and that the POLST form facilitated an opportunity to openly discuss life-sustaining treatment.

Role of Nativity in End of Life Care Planning

Given the rapidly aging population, optimal end-of-life (EOL) consistent with individual wishes is a public health priority. Advanced Care Planning (ACP) involves Advanced Directives (AD) and establishing a Power of Attorney (POA). AD describe EOL Care preferences including options to limit treatment, withhold treatment, provide comfort care, and prolong treatments. Nativity can provide meaningful guidance in decision-making at the end of life. Data from this study came from the Health and Retirement Study, nationally representative longitudinal study of U.S. residents. The sample included 4,015 older adults, 65 and above years of age who died during study follow-up. Nativity was categorized as U.S born and Foreign born. ACP variables included presence of AD and POA, and EOLC preferences included provide comfort care, limit, withhold, or prolong treatment. Covariates included age, gender, race, marital status, education, and subjective health at baseline. Cox Proportional Hazards (Cox PH) and Weibull Models were used to identify associations between nativity and end of life care. Results: Compared to U.S born, Foreign born participants were less likely to have POA (HR: 0.75; 95% CI:0.64-0.89) in Cox PH and POA (HR: 0.63; 95 % CI:0.53-0.75) Weibull models in unadjusted models, limited treatment (HR: 1.58; 95 % CI: 1.2, 2.1), and prolong treatment (HR: 0.23; 95 % CI:0.06-0.99) and Cox PH and (HR: 0.20; 95 % CI: 0.05-0.83) in Weibull modes. Conclusion: There are differences in Advanced Care Planning by nativity. Country of origin should be considered when helping individuals plan for end-of-life care.

A pilot study of trained ICU doulas providing early psychological support to critically ill patients

Background Over a third of critical illness survivors suffer from mental health problems following hospitalization. Memories of delusional experiences are a major risk factor. In this project, ICU doulas delivered a unique positive suggestion intervention targeting the vulnerable time period during critical illness when these memories are formed. Methods Adult critically ill patients were recruited for this single-arm, prospective pilot study. These ICU patients received a positive suggestion intervention daily during their ICU stay in parallel with their medical treatment. The intervention was designed to be delivered over a minimum of two sessions. Feasibility was defined as intervention delivery on ≥ 70% of ICU days after patient enrollment. As a secondary analysis, psychometric questionnaires were compared to those of a historic control cohort of patients receiving standard care in the ICU using adjusted linear regression models. Results Of the 97 patients who received the intervention and were alive at the end of their ICU course, 54 were excluded from analyses mostly for having received only one session because of a short ICU length of stay of < 2 days, transitioning to comfort care or not wanting to answer the study questionnaires. Forty-three patients who completed 2 or more sessions of the positive therapeutic suggestion intervention provided by two trained ICU doulas received it for a median of 4 days (IQR 3, 5), with each session lasting for a median of 20 min (IQR 14, 25). The intervention was delivered on 71% of days, meeting our pre-determined feasibility goal. Compared to historical controls (N = 299), patients receiving the intervention had higher severity of illness and longer length of stay. When adjusted for baseline differences, patients both with and without mechanical ventilation who received the intervention scored lower on the Hospital Anxiety and Depression Scale (HADS)—Depression subscale. The intervention was also associated with reduced HADS-Anxiety subscale among ventilated patients. Conclusions Positive therapeutic suggestion delivered by ICU doulas is feasible in the ICU setting. A randomized trial is warranted to better delineate the role that positive suggestion and ICU doulas may play in ongoing interprofessional efforts to humanize critical care medicine. The study was registered on clinicaltrials.gov (NCT03736954) on 03/14/2018 prior to the first patient enrollment https://clinicaltrials.gov/ct2/show/NCT03736954?cond=ICU+Doulas+Providing+Psychological+Support&draw=2&rank=1.

Quality of End-of-Life Cancer Care in Canada: A 12-Year Retrospective Analysis of Three Provinces’ Administrative Health Care Data Evaluating Changes over Time

This retrospective cohort study of cancer decedents during 2004–2015 examined end-of-life cancer care quality indicators (QIs) in the provinces of British Columbia (BC), Ontario, and Nova Scotia (NS). These included: emergency department use, in-patient hospitalization, intensive care unit admissions, physician house calls, home care visits, and death experienced in hospital. Ontario saw the greatest 12-year decrease in in-hospital deaths from 52.8% to 41.1%. Hospitalization rates within 30 days of death decreased in Ontario, increased in NS, and remained the same in BC. Ontario’s usage of aggressive end-of-life measures changed very little, while BC increased their utilization rates. Supportive care use increased in both NS and Ontario. Those who were male or living in a lower income/smaller community (in Ontario) were associated with a decreased likelihood of receiving supportive care. Despite the shift in focus to providing hospice and home care services, approximately 50% of oncology patients are still dying in hospital and 11.7% of patients overall are subject to aggressive care measures that may be out of line with their desire for comfort care. Supportive care use is increasing, but providers must ensure that Canadians are connected to palliative services, as its utilization improves a wide variety of outcomes.

Contribution of Concurrent Comorbidities to Sepsis-Related Mortality in Preterm Infants ≤ 32 Weeks of Gestation at an Academic Neonatal Intensive Care Network

Objective: The lack of a consensus definition for neonatal sepsis may complicate the accurate calculation of sepsis-related mortality in infants ≤ 32 weeks of gestation. This study evaluates whether concurrent major comorbidities influenced neonatal sepsis-related mortality in this patient population following a diagnosis of bacteremia or blood culture-negative sepsis. Study Design: This is a retrospective chart review of infants ≤ 32 weeks of gestation, who were admitted to a single academic network of multiple neonatal intensive care units between January 1, 2012 and December 31, 2015, to determine if concurrent co-morbidities contributed to bacteremia or blood culture-negative sepsis- related morality. Direct comparisons between early-onset sepsis (EOS; ≤ 72 hours) and late-onset sepsis (LOS; > 72 hours) were made. Results: In our study cohort of 939 total patients ≤ 32 weeks of gestation, 182 infants were diagnosed with 198 episodes of sepsis and 7.7% (14/182) died. Mortality rates did not significantly differ between neonates with bacteremia or blood culture-negative sepsis (7/14 each group), and those diagnosed with EOS compared with LOS (6/14 vs. 8/14). Nearly 80% (11/14) of infants were transitioned to comfort care prior to their death secondary to a coinciding diagnosis of severe grade 3 or 4 intraventricular hemorrhage, periventricular leukomalacia, necrotizing enterocolitis, and/or intestinal perforation. Conclusion: Those with sepsis-related mortality had pre-existing comorbidities that are commonly associated with extreme preterm birth. The contribution of comorbidities to sepsis-related mortality should be considered in future investigations designed to evaluate the efficacy of therapeutics and/or technologies that target sepsis-mediated pathways.