The objective of this study was to investigate the factors affecting the quality of dying and death among terminally ill patients in an intensive care unit in Korea using a cross-sectional, online survey. A total of 300 nurses in the intensive care unit who had cared for a terminally ill patient for at least 48 h prior to death in the past six months were chosen to participate. The person-centered critical care nursing (PCCN) score and quality of dying and death (QODD) had a positive correlation. The QODD score increased when the consultation was conducted between the terminally ill patients and their doctors when CPR was not performed within 48 h of death, and when the PCCN score increased. The quality of death of patients is affected by whether they have sufficiently consulted with healthcare providers regarding their death and how much respect they receive. It is important for nurses to practice and improve patient-centered nursing care in order to ensure a good quality of death for terminally ill patients.
OBJECTIVE: To describe the characteristics and outcomes of patients undergoing mechanical ventilation withdrawal and to compare them to mechanically ventilated patients with limitations (withhold or withdrawal) of life-sustaining therapies but who did not undergo mechanical ventilation withdrawal.
METHODS: This was a retrospective cohort study from January 2014 to December 2018 of mechanically ventilated patients with any organ support limitation admitted to a single intensive care unit. We compared patients who underwent mechanical ventilation withdrawal and those who did not regarding intensive care unit and hospital mortality and length of stay in both an unadjusted analysis and a propensity score matched subsample. We also analyzed the time from mechanical ventilation withdrawal to death.
RESULTS: Out of 282 patients with life-sustaining therapy limitations, 31 (11%) underwent mechanical ventilation withdrawal. There was no baseline difference between groups. Intensive care unit and hospital mortality rates were 71% versus 57% and 93% versus 80%, respectively, among patients who underwent mechanical ventilation withdrawal and those who did not. The median intensive care unit length of stay was 7 versus 8 days (p = 0.6), and the hospital length of stay was 9 versus 15 days (p = 0.015). Hospital mortality was not significantly different (25/31; 81% versus 29/31; 93%; p = 0.26) after matching. The median time from mechanical ventilation withdrawal until death was 2 days [0 - 5], and 10/31 (32%) patients died within 24 hours after mechanical ventilation withdrawal.
CONCLUSION: In this Brazilian report, mechanical ventilation withdrawal represented 11% of all patients with treatment limitations and was not associated with increased hospital mortality after propensity score matching on relevant covariates.
BACKGROUND: Seriously ill patients admitted to the Intensive Care Unit (ICU) experience severe spiritual and existential distress. Patients' surrogate decision makers face the burden of making complex decisions about their loved ones' care. Experienced chaplains may play a role in assisting with decision-making, possibly by aligning patients' values and wishes with treatment plans and avoiding non-beneficial aggressive measures.
OBJECTIVES: To identify associations between chaplaincy care and length of stay (LOS) in the medical ICU (MICU).
METHODS: This was a retrospective observational study of usual spiritual care in the adult MICUs of 4 medical centers in the United States over a 3-month period. Inclusion criteria were death in the MICU or discharge to palliative care or hospice. Measures included medical, treatment, and spiritual care information. Through bivariate and multivariable analyses associations between spiritual care and LOS were examined.
RESULTS: In multivariable analysis of the 254 patients, receiving spiritual care was associated with an increased likelihood of being in a higher LOS tertile (adjusted odds ratio = 2.94, p < .001). In post hoc bivariate analysis, cases receiving spiritual care within the first 48 hours of MICU admission revealed a trend toward lower LOS (p = .181).
CONCLUSION: Spiritual care in the MICU was associated with longer LOS. Early intervention by chaplains who are well-integrated in the ICU may assist patients and their loved ones in coming to terms with grave illness and making difficult treatment decisions. Further well-designed studies of spiritual care interventions that may affect outcomes are needed.
BACKGROUND: Dementia is a leading cause of death among US older adults. Little is known about end-of-life care intensity and do-not-resuscitate orders (DNRs) among patients with dementia who die in hospital.
AIM: Examine the relationship between dementia, DNR timing, and end-of-life care intensity.
DESIGN: Observational cohort study.
SETTING/PARTICIPANTS: Inpatient electronic health record extraction for 2,566 persons age 65 and older who died in 2 New York City hospitals in the United States from 2015 to 2017.
RESULTS: Multivariable logistic regression analyses modeled associations between dementia diagnosis, DNR timing, and 6 end-of-life care outcomes. 31% of subjects had a dementia diagnosis; 23% had a DNR on day of hospital admission. Patients with dementia were 18%-40% less likely to have received 4 of 6 types of intensive care (mechanical ventilation AOR: 0.82, 95%CI: 0.67 -1.00; intensive care unit admission AOR: 0.60, 95%CI: 0.49-0.83). Having a DNR on file was inversely associated with staying in the intensive care unit (AOR: 0.57, 95%CI: 0.47-0.70) and avoiding other intensive care measures. DNR placement later during the hospitalization and not having a DNR were associated with more intensive care compared to having a DNR upon admission.
CONCLUSIONS: Having dementia and a do-not resuscitate order upon hospital admission are associated with less intensive end-of-life care. Additional research is needed to understand why persons with dementia receive less intensive care. In clinical practice, encouraging advance care planning prior to and at hospital admission may be particularly important for patients wishing to avoid intensive end-of-life care, including patients with dementia.
Since intensive care unit (ICU) admission and chemotherapy use near death impair the quality of life, we studied the prevalence of both and their correlation with hospital volume in incurable gastroesophageal cancer patients as both impair the quality of life. We analyzed all Dutch patients with incurable gastroesophageal cancer who died in 2017-2018. National insurance claims data were used to determine the prevalence of ICU admission and chemotherapy use (stratified on previous chemotherapy treatment) at three and one month(s) before death. We calculated correlations between hospital volume (i.e., the number of included patients per hospital) and both outcomes. We included 3748 patients (mean age: 71.4 years; 71.4% male). The prevalence of ICU admission and chemotherapy use were, respectively, 5.6% and 21.2% at three months and 4.2% and 8.0% at one month before death. Chemotherapy use at three and one months before death was, respectively, 4.3 times (48.0% vs. 11.2%) and 3.7 times higher (15.7% vs. 4.3%), comparing patients with previous chemotherapy treatment to those without. Hospital volume was negatively correlated with chemotherapy use in the final month (rweighted = -0.23, p = 0.04). ICU admission and chemotherapy use were relatively infrequent. Oncologists in high-volume hospitals may be better equipped in selecting patients most likely to benefit from chemotherapy.
BACKGROUND: End-of-life (EOL) supportive care, including palliative and hospice services, is an area of increasing importance in critical care. Neurointensivists face unique challenges in providing timely supportive care to terminally ill patients expected to expire in the NeuroICU.
OBJECTIVE: This study explored the extent of effective utilization of, and recorded barriers to, palliative and hospice services in a dedicated 30-bed NeuroICU at a large academic medical center.
DESIGN: A retrospective chart review of patients who expired in the NeuroICU was conducted. The timeline from patient admission to arrival of palliative care services was traced. Qualitative review of chart notes was used to identify barriers to provision of palliative services.
SETTING: A total of 330 patients expired in the NeuroICU during the study period, including 176 from the neurology and 154 from the neurosurgical service.
RESULTS: Across services, 146 expired patients were never referred to palliative care or hospice services. Of those referred, over one-third were referred more than 4 days past admission to the NeuroICU. On average, patients were referred with less than 1 day before expiration. Common barriers to referral for supportive services were documented (e.g., patient expected to expire, family declined service).
CONCLUSIONS: Despite benefits of palliative care and an in-hospital hospice opportunity, we identified lack of referral, and particularly delays in referral to services as significant barriers. Our study highlights these as missed opportunities for patients and families to receive maximum benefits from these services. Future research should solidify triggers for EOL services in this setting.
PURPOSE: The purpose is to explore triggers for moral distress, constraints preventing physicians from doing the right thing and ensuing consequences in making decisions for patients approaching end of life in intensive care.
MATERIALS AND METHODS: The qualitative study was undertaken in a tertiary referral intensive care unit in Northern Ireland in the United Kingdom. Drawing upon patient case studies of decisions about non escalation and/or withdrawal of life support, we undertook indepth interviews with senior and junior physicians. Interviews were transcribed verbatim and narratively analysed.
RESULTS: Eighteen senior and junior physicians involved in 21 patient case studies were interviewed. Analysis determined two predominant themes: key moral distress triggers; and strategies and consequences. Junior residents reported most instances of moral distress, triggered by perceived futility, lack of continuity, protracted decisions and failure to ensure 'good death'. Senior physicians' triggers included constraint of clinical autonomy. Moral distress was far reaching, affecting personal life, working relationships and career choice.
CONCLUSION: This study is the first to explore physicians' moral distress in end-of-life decisions in intensive care via a narrative inquiry approach using case studies. Results have implications for the education, recruitment and retention of physicians, relevant in the Covid 19 pandemic.
INTRODUCTION: More Australians die in the hospital than in any other setting. This study aimed to (i) evaluate the quality of end-of-life (EOL) care in the hospital against an Australian National Standard, (ii) describe the characteristics of intensive care unit (ICU) clinician involvement in EOL care, and (iii) explore the demographic and clinical factors associated with quality of EOL care.
METHOD: A retrospective descriptive medical record audit was conducted on 297 adult inpatients who died in 2017 in a private acute care hospital in Melbourne, Australia. Data collected related to 20 'Processes of Care', considered to contribute to the quality of EOL care. The decedent sample was separated into three cohorts as per ICU clinician involvement.
RESULTS: The median age of the sample was 81 (25th-75th percentile = 72-88) years. The median tally for EOL care quality was 16 (25th-75th percentile = 13-17) of 20 care processes. ICU clinicians were involved in 65.7% (n = 195) of cases; however, contact with the ICU outreach team or an ICU admission during the final inpatient stay was negatively associated with quality of EOL care (coefficient = -1.51 and -2.07, respectively). Longer length of stay was positively associated with EOL care (coefficient = .05). Specialist palliative care was involved in 53% of cases, but this was less likely for those admitted to the ICU (p < .001). Evidence of social support, bereavement follow-up, and religious support were low across all cohorts.
CONCLUSION: Statistically significant differences in the quality of EOL care and a negative association between ICU involvement and EOL care quality suggest opportunities for ICU outreach clinicians to facilitate discussion of care goals and the appropriateness of ICU admission. Advocating for inclusion of specialist palliative care and nonclinical support personnel in EOL care has merit. Future research is necessary to investigate the relationship between ICU intervention and EOL care quality.
Aim: In complex congenital heart diseases (CHD), patients may remain affected by significant morbidity and mortality after surgery. We analysed the end-of-life (EoL) care in children with severe CHD who died in our institution and investigated perspectives of parents and health-care professionals (HCPs).
Methods: Medical records of all children (age < 18 years old) affected by a severe CHD who died in a tertiary cardiac care centre were reviewed. Subsequently, a cross-sectional questionnaire-based study of parents and HCPs of children involved in the study was designed.
Results: In total, 30 children died (median age: 45 days; range: 15 days to 3.4 years). Of them, 97% (31/32) died in an intensive care unit setting and were intubated and sedated at EoL. A total of 77% (23/30) died without parents being present at bedside. Eighteen families and 10 HCPs were interviewed. For 61% of the parents (11/18) and 70% of the clinicians (7/10), the goal of therapy at the EoL was 'to lessen your child's suffering as much as possible'. Overall, 44% of parents (8/18) and 50% of HCPs recognised that their child had no chance of survival 'a few days before the child died'.
Conclusions: We believe that these data suggest an unconscious reluctance to change goals of care in EoL, shifting from intensive care to comfort and quality of life.
Keywords: bereavement; congenital heart disease; end-of-life care; paediatric intensive care unit; paediatric palliative care; quality of dying and death.
OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered.
METHODS: Retrospective cohort study in a tertiary PICU at a university hospital in Brazil. All patients aged 1 month to 18 years who died were eligible for inclusion. The exclusion criteria were those brain death and death within 24h of admission.
RESULTS: 53 patients were included in the study. The prevalence of a LSL report was 45.3%. Out of 24 patients with a report of LSL on their medical records only 1 did not have a do-not-resuscitate order. Half of the patients with a report of LSL had life support withdrawn. The length of their PICU stay, age, presence of parents at the time of death, and severity on admission, calculated by the Pediatric Index of Mortality 2, were higher in patients with a report of LSL. Compared with other historical cohorts, there was a clear increase in the prevalence of LSL and, most importantly, a change in how limitations are carried out, with a high prevalence of parental participation and an increase in withdrawal of life support.
CONCLUSIONS: LSLs were associated with older and more severely ill patients, with a high prevalence of family participation in this process. The historical comparison showed an increase in LSL and in the withdrawal of life support.
The high mortality in intensive care unit (ICU) requires health workers to be able to provide palliative care so that patients die in peace and help the patient's family face the grieving process. The implementation of palliative care must be organized and assessed for the quality of its implementation. The aim was to describe the quality of palliative care in ICU "X" Hospital. The research used Mixed Methods. The first was the quantitative with descriptive research. The sample was 38 nurses and 4 doctors to obtain data on the quality of palliative care with The Self-Report Questionnaire (0-10). The second of qualitative methods to deepen quantitative data with achieved data saturation in 5 nurses and 2 doctors. Retrieval of data from May to July 2019. The results were the quality of palliative care performed by nurses had a score of 6.68, for doctors were 5.19. The lowest score (5.29) was found in the emotional support, and organizational domain for ICU clinicians for nurses with the theme of the role of coworkers and the desire to act alone, for doctors the lowest score (3.93) was spiritual support for patients family with the theme of the absence of operational standards of spiritual support procedures and knowledge and experience of spiritual support. The conclusion is the quality of palliative care services performed by nurses has a score of 6.68 and for doctors was 5.19.
CONTEXT: Palliative care triggers have been used in the ICU setting, usually in high income countries, to identify patients who may benefit from palliative care consults. The utility and benefits of palliative care triggers in the ICU has not been previously studied in sub-Saharan Africa.
OBJECTIVES: Our objectives were to determine the prevalence of ICU admissions who met at least one palliative care trigger and whether a palliative care consult influenced the length of ICU stay and time to change of goals order.
METHODS: We conducted a prospective observational cohort study within our ICU at The Aga Khan University Hospital, Nairobi between December 2019 and August 2020. Data including initiation of a palliative care consult, length of ICU stay, mortality and time to change of goals order was collected.
RESULTS: During our study period, 72 of 159 (45.9%) patients met at least one palliative care trigger point. Of the patients who met the palliative care triggers, only 29.2% received a palliative care consult. Patients who received palliative care consults had higher rates of change of goals orders signed (52.3%) versus those who did not (P=0.009). There was no statistically significant difference between the consult and non-consult groups in regards to length of ICU stay, time to change of goals order and mortality.
CONCLUSION: A trigger-based model, geared to the needs of the specific ICU, may be one way of improving integration of palliative care into the ICU, especially in sub-Saharan Africa.
Context: Few studies have described the characteristics and palliative care needs in hospitalized patients with coronavirus disease 2019 (COVID-19).
Objectives: Describing characteristics, consultation demands, patients' needs, and outcomes of hospitalized patients with COVID-19 who received a palliative care evaluation.
Methods: Retrospective chart review of patients (aged 18+ years) with COVID-19 admitted to an academic quaternary center and seen by the geriatrics and palliative medicine team from March 1st to May 11th, 2020. Socio-demographics, operational metrics, severity of illness, goals of care-advanced care planning documentation, and outcomes were analyzed.
Results: Three hundred seventy-six (17.6%) out of 2138 COVID-19 admissions were seen by the consultation team. Compared with prepandemic situation (September 1st, 2019, to February 29th, 2020), overall new consults (205 vs. 371, P < 0.001) significantly increased, particularly in the intensive care unit (ICU; 9.5% vs. 36.9%, P < 0.001). For the COVID-19 population, median age was 78 years (interquartile range, 70-87; range, 36-102); 56% were male. LACE score, D-dimer, and C-reactive protein suggested severe disease and increased risk of mortality. Seventy-five percent of consults were for goals of care-advanced care planning, and 9.6% for symptoms. During the index admission, 7.1% had documented advanced directives, and 69.7% became do not resuscitate. Of all deaths, 55.5% were in the ICU, and 87.2% were aged =65 years. Underserved minority patients had a disproportionate mortality. Overall consultation mortality (38.3% vs. 70.4%, P < 0.001) and ICU mortality (55.2% vs. 78.1%, P < 0.001) significantly increased compared with those before COVID-19.
Conclusion: During this pandemic, understanding inpatient specialized palliative care needs and the vulnerable populations driving these causes may encourage health-care agencies and local, state, and federal governments to support the dedicated palliative care workforce.
BACKGROUND: Elderly patients frequently experience deteriorating health after critical illness, which may threaten their independence and predispose them to unplanned hospital readmissions and premature death.
OBJECTIVES: To evaluate the operational feasibility of a 90-day home-based palliative care intervention in multimorbid elderly Veteran survivors of critical illness.
METHODS: A multidisciplinary home-based palliative care intervention was provided for multimorbid elderly veterans who were discharged home after admission to the intensive care unit for sepsis, pneumonia, heart failure, or exacerbation of chronic obstructive lung disease.
RESULTS: Fifteen patients enrolled in the study, 11 (73%) of whom completed all visits; thus the prespecified goal of >70% completion was met. Median (interquartile range [IQR]) age of the patients was 76 (69-87) years. Participants had a median (IQR) of 8 (7-8) concurrent chronic health conditions, were moderately debilitated at baseline, and were all male. The median (IQR) time to the first study visit was 8 (5-12) days. Patients had a median (IQR) of 8 (5-11) in-home visits and 6 (3-7) telephone encounters during the 90-day study period. Nurses spent a median (IQR) cumulative time of 330 (240-585) minutes on home visits and 30 (10-70) minutes on telephone visits. The median (IQR) time per home provider visit was 90 (75-90) minutes. We estimated the median (IQR) cost per patient to be $2321 ($1901-$3331).
CONCLUSION: A comprehensive home-based palliative care intervention is operationally feasible in elderly multi-morbid survivors of critical illness and may result in improved physical functioning and quality of life and fewer unplanned emergency department visits.
AIMS AND OBJECTIVES: To understand how prognostic information is communicated by Jordanian doctors and nurses to the families of dying patients in intensive care units, with an emphasis on exploring how hope and truth telling about patients' poor prognosis are managed.
BACKGROUND: Improving end-of-life care requires a focus on adequate family-professionals prognostic communication, while maintaining a realistic level of hope and family support.
DESIGN: A descriptive qualitative approach was applied.
METHODS: Semi-structured interviews were conducted with 20 nurses and 15 resident doctors caring for dying patients. Bardin's procedure of categorical content analysis was applied. The COREQ checklist for reporting qualitative studies was followed.
RESULTS: Two main categories emerged from the data of this study, 'perspectives on optimistic hope' and 'approaches to prognostic communication'. Health professionals experience extreme difficulty, and therefore frequently avoid, openly disclosing information about patients' poor prognosis to the families. Consequently, the health professionals adopted various methods to balance truth telling against sustaining hope among the patients' families. Providing false assurance was perceived as permissible and understandable, in order to nurture the families' hope.
CONCLUSIONS: Improving end-of-life care in intensive care units in Jordan requires a focus on family-professional communication. Jordanian intensive care doctors and nurses perceived honest family-professional communication regarding dying patients to be extremely challenging. Healthcare professionals should develop their competency of meeting the informational and emotional needs of patients in ICUs and their families, while also honoring their cultural values, during prognostic communication.
RELEVANCE TO CLINICAL PRACTICE: Effective training of healthcare professionals is vital, on ways to enhance communication of prognostic information and to foster realistic hope among families of dying patients in intensive care units. There is a need to also explore the families' perspectives on prognostic communication in order to understand the similarities and differences between the professionals' and families' perspectives.
Context: The quality of end-of-life care services directly affects the end-of-life quality of life of patients and their families. At present, there are no standard tools in China for assessing the quality of dying and death (QODD) of critical intensive care unit (ICU) patients.
Objectives: This study aimed to introduce the Chinese version of the QODD questionnaire for family members of ICU patients, after transcultural adaptation and validation, to provide an effective instrument for assessing the quality of end-of-life care of ICU patients in China, fill the gap in the evaluation of the quality of end-of-life care of critical ICU patients in China, and offer a theoretical basis and practical guidance during purposeful intervention.
Methods: This study involved the main adult caregivers or principal family members of 149 dying critically ill patients. The original QODD scale was translated using the double forward and backward method. Nine cultural adaptation experts adapted the Chinese version of the QODD scale for completion by family members of ICU patients. Then, we carried out content validity, structural validity, internal consistency, confirmatory factors, and item correlation analysis of the modified scale.
Results: The Chinese version of the QODD for family members of ICU patients was developed after some items were deleted or modified. The content validity index was 0.93, indicating that all items were correlated with the measurement of death quality. The Kaiser-Meyer-Olkin value was 0.797, suggesting that the correlations between items were high. The Cronbach's a was 0.865, indicating good internal consistency. In confirmatory factor analysis, the fit indices were 2 = 207.327, non-normed fit index = 0.916, root mean square error of approximation = 0.033, and comparative fit index = 0.93, indicating a good fit of the five-factor model of the Chinese version of the QODD questionnaire for family members of ICU patients.
Conclusion: The Chinese version of the QODD questionnaire for family members of ICU patients is a reliable and effective instrument for evaluating the quality of death among patients who die in the ICU and can be applied to clinical practice and research.
Despite the recent attention given to palliative care for patients with heart disease, data about the treatments in their actively dying phase are not sufficiently elaborated. In this study, we used the sampling dataset of a national database to compare the aggressive treatments performed in patients with cancer and those with heart disease. We only included patients deceased in January or July from 2011 to 2015, using the Diagnosis Procedure Combination sampling dataset of the National Database of Health Insurance Claims and Specific Health Checkups of Japan (NDB). Patients who were discharged within the first 10 days of each month were excluded. We explored and compared aggressive treatments such as cardiopulmonary resuscitation and intensive care utilization, performed within seven days before death in cancer patients. We used 10,637 (0.4% of the dataset) deceased target population (40.0% female), with 7844 (73.7%) and 2793 (26.3%) being the proportion of cancer and heart disease patients, respectively. Aggressive treatments and procedures such as cardiopulmonary resuscitation (18.4%), intensive care utilization (5.4%), use of inotropes (43.4%), use of respirators (29.1%), and dialysis (4.5%) were frequently observed in heart disease patients. These associations remained after adjusting for age, sex, and disease severity. This study indicates the possible use of an NDB sampling dataset to evaluate the aggressive treatments and procedures in the actively dying phase in both heart disease and cancer patients. Our results showed the differences in aggressive treatment strategies in the actively dying phase between patients with cancer and those with heart disease.
Background: There is wide variability between intensivists in the decisions to forgo life-sustaining treatment (DFLST). Advance directives (ADs) allow patients to communicate their end-of-life wishes to physicians. We assessed whether ADs reduced variability in DFLSTs between intensivists.
Methods: We conducted a multicenter, prospective, simulation study. Eight patients expressed their wishes in ADs after being informed about DFLSTs by an intensivist-investigator. The participating intensivists answered ten questions about the DFLSTs of each patient in two scenarios, referring to patients’ characteristics without ADs (round 1) and then with (round 2). DFLST score ranged from 0 (no-DFLST) to 10 (DFLST for all questions). The main outcome was variability in DFLSTs between intensivists, expressed as relative standard deviation (RSD).
Results: A total of 19,680 decisions made by 123 intensivists from 27 ICUs were analyzed. The DFLST score was higher with ADs than without (6.02 95% CI [5.85; 6.19] vs 4.92 95% CI [4.75; 5.10], p < 0.001). High inter-intensivist variability did not change with ADs (RSD: 0.56 (round 1) vs 0.46 (round 2), p = 0.84). Inter-intensivist agreement on DFLSTs was weak with ADs (intra-class correlation coefficient: 0.28). No factor associated with DFLSTs was identified. A qualitative analysis of ADs showed focus on end-of-life wills, unwanted things and fear of pain.
Conclusions: ADs increased the DFLST rate but did not reduce variability between the intensivists. In the decision-making process using ADs, the intensivist’s decision took priority. Further research is needed to improve the matching of the physicians’ decision with the patient’s wishes.
Trial registration ClinicalTrials.gov Identifier: NCT03013530. Registered 6 January 2017; https://clinicaltrials.gov/ct2/show/NCT03013530.
BACKGROUND AND OBJECTIVES: This paper explores current concerns and practice related to older people dying alone in Intensive Care Units, care homes, and at home through media discussions during the Covid-19 pandemic and before. It addresses the historically-situated concept of a good death and a bad death and suggests why dying alone, whether completely alone or without significant others physically present, may be considered a bad death.
METHODS: As evidence for collective fears about dying alone, we explored the treatment of these deaths in media using headline examples from the US New York Times and the English Guardian newspaper from the 19th century through Sept. 2020.
RESULTS: A search of the New York Times located 39 articles with either lonely dying or lonely death in the headline. The Guardian had 25 articles with use of the term, but unlike the New York Times, no obituaries were included. Although the deaths profiled were deemed unusual, deaths by suicide were only minimally classed as dying alone. The condition of dying alone is represented as a stigmatised death. Themes addressed: 1) dying alone is a nonnormative event; 2) this death matters; and 3) where people die alone, societies should honour the death and learn from it.
DISCUSSION AND IMPLICATIONS: Contemporary dying involves conditions for which we are unprepared as a society. We seldom address our civic obligations to each other. Few people have discussed their wishes about their preferences in dying and whether and how they want to be accompanied at their death, if possible. This is an invisible constraint of modern healthcare. Because of limited discussions and preparation, these deaths may lead to disenfranchised grief for the mourners. Cultural and societal responses to lonely dying are important in easing the emotional burden of dying alone, helping individuals prepare for this possibility and better integrating death with the life course. Recommendations include inclusion of accompaniment/nonaccompaniment at death as part of advance care planning and mitigation if this condition occurs. It is essential for individuals to find their own still point of acceptance within competing societal narratives of privileging the self in dying alone and the value of social connection.
OBJECTIVES: The COVID-19 pandemic in the USA has been accompanied by high rates of mortality and an unprecedented need for palliative care delivery. Little is known about the use of palliative care services in intensive care unit (ICU) settings during the COVID-19 pandemic.
METHODS: This is a retrospective cohort study of critically ill COVID-19 patients requiring ICU admission, between 7 March and 14 April 2020 to two academic teaching hospitals in New York City. Palliative care consultation included a one-time telemedicine consultation or continued telemedicine consultation and follow-up with multidisciplinary team involvement. Patient information was collected from the electronic health record and analyses were conducted with Stata V.15.1 (StataCorp) statistical software.
RESULTS: A total of 151 critically ill patients with COVID-19 pneumonia requiring ICU admission were identified, of whom 59 (39.07%) received an inpatient palliative care consultation. More than half of patients died (n=85/151, 56.29%), with 57.65% (n=49/85) of these patients receiving palliative care services during their hospitalisation. Patients who received palliative care consultation were more likely to be older, sicker and receive mechanical ventilation than their counterparts. Patients who died and did not receive palliative care were younger and required non-invasive ventilation support.
CONCLUSION: There is a lack of utilisation of palliative care in COVID-19 patients admitted to the ICU. Further research into predictors of poor outcomes in critically ill COVID-19 patients may help identify patients that would benefit from early palliative care involvement going forward.