The State of the Do-Not-Resuscitate Order in a Pediatric Intensive Care Unit in the Middle East: A Retrospective Study

Objectives The Do-Not-Resuscitate (DNR) order is part of most hospitals’ policies on the process of making and communicating decisions about a patient's resuscitation status. Yet it has not become a part of our society's ritual of dying in the Middle East especially among children. Given the diversity of pediatric patients, the DNR order continues to represent a challenge to all parties involved in the care of children including the medical team and the family. Methods This was a retrospective review of the medical charts of patients who had died in the pediatric intensive care unit (PICU) of a tertiary academic institution in Beirut, Lebanon within the period of January 2012 and December 2017. Results Eighty-two charts were extracted, 79 were included in the analysis. Three were excluded as one patient had died in the Emergency Department (ED) and 2 charts were incomplete. Most patients were male, Lebanese, and from Muslim families. These patients clinically presented with primary cardiac and oncological diseases or were admitted from the ED with respiratory distress or from the operating room for post-operative management. The primary cause of death was multiorgan failure and cardiac arrest. Only 34% of families had agreed to a DNR order prior to death and 10% suggested “soft” resuscitation. Most discussions were held in the presence of the parents, the PICU team and the patient's primary physician. Conclusions The DNR order presents one of the most difficult challenges for all care providers involved, especially within a culturally conservative setting such as Lebanon. As the numbers suggest, it is difficult for parents to reach the decision to completely withhold resuscitative measures for pediatric patients, instead opting for “soft” resuscitations like administering epinephrine without chest compressions.

Prevalence and Predictors of Palliative Care Utilization among Hospitalized Patients with Diffuse Large B-Cell Lymphoma

Objective: Research has shown that palliative care improves the quality of life of cancer patients; however, there is no literature on specific factors that predict its use in diffuse large b-cell lymphoma (DLBCL) patients. Therefore, the prevalence of palliative care utilization and predictors of palliative care utilization among patients with DLBCL were examined. Methods: Data from the National Inpatient Sample (NIS) collected between 2016 to 2018 were used for all analyses. Multivariable logistic regression models were used to examine the predictors of palliative care utilization among hospitalized patients with DLBCL. Descriptive analyses were used to explore the overall prevalence of palliative care receipt in this population. Results: Of the 41,789 hospitalizations, 7.1% of patients used palliative care during hospitalization, while 4.8% utilized palliative care and were discharged alive. DLBCL patients aged 70 and older had 1.3 times (95% CI: 1.14-1.41) higher odds of utilizing palliative care compared to those less than 70 years. Relative to Medicare/Medicaid patients, those with other types of insurance were 1.7 times (95% CI: 1.34-2.05) more likely to receive palliative care. Those who were either transferred to a facility/discharged with home health (AOR: 6.23; 95% CI: 5.21-7.44) or died during hospitalization (AOR: 45.17; 95% CI: 36.98-55.17) had higher odds of receiving palliative care when relative to those with a routine hospital discharge. Other associated factors were type of admission, length of stay, chemotherapy receipt, and number of comorbidities. Conclusions: The prevalence of palliative care utilization was low and factors predicting utilization in our population were identified. Our findings highlight the need to increase awareness among medical oncologists on the need to involve the palliative care team early in the management of hospitalized patients with DLBCL.

Canadian Undergraduates’ Perspectives on Medical Assistance in Dying (MAiD): A Quantitative Study

Background and Objectives: In 2016, Medical Assistance in Dying (MAiD) became legal in Canada for those suffering a grievous and untreatable medical condition. Currently, it is not available to minors or to those with an untreatable mental illness, although it is likely the scope of MAiD will be widened to include persons with severe and untreatable mental illnesses. However, little is known about the factors predicting acceptance or rejection of MAiD for persons with either a grievous medical condition or an untreatable mental illness. Methods: A survey was administered to 438 undergraduate students to examine factors associated with their acceptance or rejection of MAiD. The survey included four different scenarios: a young or old person with an untreatable medical condition, and a young or old person with an untreatable mental illness. Demographic questions (age, sex, religion, etc), personality measures, and an attitude towards euthanasia scale were also administered, as well as questions assessing participants’ general understanding of MAiD and their life experiences with death and suicide. Results/Conclusion: Overall, most of the Canadian undergraduate participants accepted MAiD for both terminally ill and mentally ill patients; however, different variables, such as age, religion, and ethnicity, predicted the acceptance or rejection of MAiD for each scenario.

Cultural Adaptation and Testing of the Italian Version of the Edmonton Functional Assessment Tool-2 (EFAT2-I)

Background Physiotherapy in Palliative Care (PC) is effective in the management of a series of respiratory, circulatory and motor symptoms, and often has a positive impact on the patient's mood. The Edmonton Functional Assessment Tool (EFAT) is the only existing validated tool specifically designed for functional assessment in PC, and its use has been recommended in clinical practice. To date, no Italian version of the tool has been validated. The aim of this study was to translate, cross-culturally adapt, and evaluate the psychometric properties of the Italian version of the EFAT2. Method After receiving formal permission from the author, Beaton guidelines for cross-cultural adaptation were followed, namely: (1) forward translation; (2) a multidisciplinary focus group (including 4 physiotherapists, 1 physician, 3 nurses, 1 occupational therapist, 1 psychologist) to assess semantic, idiomatic, experiential, and conceptual equivalence; (3) backward translation. The Content Validity Index (CVI) was used to assess content validity of the tool. Construct and concurrent validity were also evaluated. To evaluate the reliability of the EFAT2-I, reliability was measured using Cronbach alfa, item-total correlation, and Cohen's Kappa. Results 119 patients admitted to a Palliative Care Unit (Italy) agreed to participate in the study. The EFAT2-I mean score was 11.3, ranging from 0 to 30. Very good CVI scores were achieved, both in terms of single item validity (I-CVI) and of whole scale validity (S-CVI). Positive results were obtained from construct, concurrent validity assessment and measures of reliability. Discussion The EFAT2-I showed good psychometric properties and can be used as a rehabilitation assessment tool in palliative care settings. The validation of the Italian version will allow comparison of different centres and palliative care facilities on national and international levels.

A National Survey of Palliative Care Team Compositions

Purpose: It is unclear how well palliative care teams are staffed at US cancer centers. Our primary objective was to compare the composition of palliative care teams between National Cancer Institute (NCI)-designated cancer centers and non-NCI-designated cancer centers in 2018. We also assessed changes in team composition between 2009 and 2018. Methods: This national survey examined the team composition in palliative care programs at all 61 NCI-designated cancer centers and in a random sample of 60 of 1252 non-NCI-designated cancer centers in 2018. Responses were compared to those from our 2009 survey. The primary outcome was the presence of an interprofessional team defined as a palliative care physician, nurse, and psychosocial member. Secondary outcomes were the size and number of individual disciplines. Results: In 2018, 52/61 (85%) of NCI-designated and 27/38 (71%) non-NCI-designated cancer centers in the primary outcome comparison responded to the survey. NCI-designated cancer centers were more likely to have interprofessional teams than non-NCI-designated cancer centers (92% vs 67%; P = .009). Non-NCI-designated cancer centers were more likely to have nurse-led teams (14.8% vs 0.0%; P = .01). The median number of disciplines did not differ between groups (NCI, 6.0; non-NCI, 5.0; P = .08). Between 2009 and 2018, NCI-designated and non-NCI-designated cancer centers saw increased proportions of centers with interprofessional teams (NCI, 64.9% vs 92.0%, P < .001; non-NCI, 40.0% vs 66.7%; P = .047). Conclusion: NCI-designated cancer centers were more likely to report having an interprofessional palliative care team than non-NCI-designated cancer centers. Growth has been limited over the past decade, particularly at non-NCI-designated cancer centers.

“Spanish Palliative Care Nurses’ Degree of Acceptance of a Proposal for Nursing Competencies in Palliative Care”

Background In Spain, palliative care (PC) nursing is not a recognized specialization and PC nurses do not receive systematic specialized academic training in PC. To ensure the quality of PC in Spain, the Spanish Association of Palliative Care Nursing has been working since 2011 to design a model of competencies for PC nurses. Objective: Verify whether a sample of Spanish PC nurses accepts the proposed model of PC nursing competencies describing their work. Methods: Descriptive cross-sectional observational study based on an ad-hoc questionnaire about 98 proposed competencies, which participants rated for whether they belong to the purview of PC nurses and for their degree of concordance with their own practice and their degree of importance in PC nursing. Competencies receiving approval by more than 75% of participants for the three dimensions were considered to have been accepted by consensus. Mixed logistical models were developed to study the association between demographic variables and the responses. Results: Sixty-two out of 98 proposed competencies were accepted by more than 75% of participants. We therefore considered these competencies to have been accepted by consensus. Thirty-six proposed competencies failed to meet the threshold of 75% acceptance. For competencies that were accepted overall, participants with more than 10 years of experience in PC and participants with specialized training in PC were more likely to report that these competencies were part of the purview of PC nursing. Participants age >50 were less likely to report that competencies related to research concorded with their practice. Participants accepted the importance of all 98 proposed competencies. Conclusion: The variables of experience, training and age had a statistically significant relationship with the acceptance or rejection of the proposed competencies on the basis of purview and concordance. Further research is necessary to understand more fully these relationships to eventually arrive at a consensus model for the competencies of PC nurses.

Revision and Validation of the Chinese Version of the McGill Quality of Life Questionnaire for ICU End-of-Life Patients

Background Hospice care for end-of-life patients in the ICU should focus on quality of life. Currently, there are no specific quality-of-life measures for ICU end-of-life patients in China. Objective The aim of this study was to revise and culturally adapt the Taiwanese version of the McGill Quality of Life Questionnaire (MQOL-Taiwan) and to test its reliability and validity to provide an effective instrument for assessing the quality of life of ICU patients at the end of life. Methods The revision and cultural adaptation of the MQOL-Taiwan were performed to develop a Chinese version of the McGill Quality of Life Questionnaire for ICU end-of-life patients (MQOL-ICU). A total of 156 ICU doctors, 286 ICU nurses and 120 ICU family members of end-of-life patients were surveyed with the revised scale to evaluate the quality of life of ICU patients at the end of life. The content validity, construct validity, and internal consistency of the scale were measured after the revision. Results The Chinese version of the MQOL-ICU scale was formed based on the MQOL-Taiwan scale, which includes 8 items. For the Chinese version of the MQOL-ICU, the item-content validity index (I-CVI) ranged from 0.789 to 0.905, and the average scale-level content validity index (S-CVI/Ave) was 0.845. After exploratory factor analysis, the Kaiser-Meyer-Olkin (KMO) value was 0.700, and 3 dominant factors were extracted: physical and psychological symptoms, existential well-being, and support. In addition, 70.385% of the total variance was explained. The internal consistency (Cronbach's α) coefficient of the whole MQOL-ICU was 0.804, and the coefficients for the 3 domains ranged from 0.779 to 0.833. Conclusion The Chinese version of the MQOL-ICU showed good reliability and validity, and it can be used to assess the quality of life of ICU patients at the end of life.

Trained Clinician's Documentation of Serious Illness Conversations and Use of Billing CPT 99497

Background Advance care planning (ACP) involves patients and family members in discussions with clinicians about their values, goals, and preferences regarding future medical care. Objectives: To (1) assess whether an ACP conversation using the Serious Illness Conversation (SIC) was initiated and documented; (2) assess which components of SIC were documented; (3) determine how frequently clinicians trained to use the SIC guide used ACP billing codes during the study time period, (4) determine whether there was a significant difference in mortality risk score according to documentation of each component of the SIC. Methods; Thirteen clinicians at three family medicine offices were trained in the Serious Illness Care Program and asked to document SICs in the electronic medical record (EMR). A retrospective chart review of SIC components was conducted in the EMRs of patients who presumably had ACP conversations initiated by the trained clinicians. Patients were identified using the billing codes for ACP conversations and through referrals from another study that requires clinicians to have ACP conversations with their patients. Pearson chi-square test for categorical variables and t-tests for continuous variables were conducted. Results: A total of 157 patients were included in this study; 131 patients referred from another ACP study and an additional 26 patients using the billing codes of ACP conversations. Through retrospective chart review, the mean age of patients was 72 years and 54 were male. Sixty-two (40%) charts had one or more SIC components documented. “Explore key topics” was documented most frequently for 58 (38%) patients by the 13 participating clinicians. Mean mortality risk score was 10.7 and higher scores were significantly correlated with more SIC components documented ( rp = 0.217, P = 0.007). Conclusion: Little use of the SIC guide among trained physicians was found in the EMR. It was expected that provision of an EMR template for documenting the SIC would have facilitated documentation of SICs.

Exploring Specialist Palliative Care Practitioner Perspectives on the Face Validity of the Attitude to Health Change Scales in Assessing the Impact of Life-limiting Illness on Patients and Carers

Background: Identifying and assessing vulnerability and resilience through reflexive reactions and conscious coping responses to life-limiting illness is an important, but rarely assessed, component of care. The novel Attitude to Health Change scales can contribute to this, but require fuller development and testing. Objectives: Exploring face validity of the Attitude to Health Change Scales (patient and carer versions) from the perspective of specialist palliative care professionals. Design: A two-stage study: (i) focus groups to explore experiences of scale use and wording, (ii) online survey to gather preferences on possible scale modifications. Focus group data were analysed using framework analysis. A hermeneutic approach was used to modify the wording of the scales, ensuring adherence to the underpinning concepts used in the design of the scale, congruence with the palliative care context, and simplicity of language. Setting/Subjects: Specialist palliative care practitioners in UK hospice settings who had been involved in pilot use of the scales in clinical practice. Results: 21 practitioners participated in 3 focus groups across 3 UK hospice sites, 9 of those participants responded to the survey. Four themes are presented: the importance and distinctiveness of the scales; maintaining conceptual integrity; ensuring a palliative care focus; and ensuring linguistic clarity. New iterations of the patient and carer versions of the Attitude to Health Change scales were developed. Conclusion: The scales appear to reflect the intended theoretical constructs, and are worded in a way which is congruent with the experience of specialist palliative care practitioners.

Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment

Background Discussing advance care planning (ACP) with care partners may be a steppingstone to the completion of advance directives (ADs) for persons with cognitive impairment (PwCIs). Objectives To examine whether PwCI-reported occurrence of and PwCI-care partner agreement about ACP discussions are associated with completion of ADs. Design and Subjects We conducted a secondary, cross-sectional analysis of data from 1672 PwCI-care partner dyads in the BLINDED study. PwCIs were Medicare beneficiaries in the US, aged >65 years, and diagnosed with mild cognitive impairment or dementia. Care partners were identified by PwCIs as being most involved in their health care. Measurements PwCIs’ completion of ADs was determined by 1 or more affirmative responses to dichotomous indicators for formalizing a living will, medical directive, or durable power of attorney for health care. Discussion occurrence was based on PwCI reports and agreement between PwCI and care partner reports of prior conversations about PwCIs’ ACP preferences between PwCIs and care partners. Results In logistic regression models adjusted for PwCI and care partner characteristics, PwCIs who had (vs. had not) discussed ACP were 10% more likely to complete ADs. PwCIs from dyads agreeing (vs. disagreeing) a discussion occurred were 7% more likely to complete ADs. PwCIs from care dyads in agreement (vs. disagreement) about non-discussion were 11% less likely to formalize ADs. Conclusions Discussing ACP with care partners plays a direct, positive role in completing ADs among PwCIs. Health care providers who approach ACP as a dyadic, communicative decision-making process from the outset may facilitate PwCIs’ uptake of ADs.