Palliative Medicine and End of Life Care Between Races in an Academic Intensive Care Unit.

Background: Although palliative medicine (PM) is more commonly being integrated into the intensive care unit (ICU), research on racial disparities in this area is lacking. Our objectives were to (a) identify racial disparities in utilization of PM consultation for patients who received ICU care and (b) determine if there were differences in the use of code status or PM consultation over time based on race. Materials and Methods: Retrospective analysis of 571 patients, 18 years and above, at a tertiary care institution who received ICU care and died during their hospital stay. We analyzed two timeframes, 2008-2009 and 2018-2019. Univariate analysis was utilized to evaluate baseline characteristics. A multivariate logistic regression model and interaction P values were employed to assess for differential use of PM consultation, do not resuscitate (DNR) orders, and comfort care (CC) orders between races in aggregate and for changes over time. Results: There was a notable increase in Black/African-American (AA) (54% to 61%) and Hispanic/Latino (2% to 3%) patients over time in our population. Compared to White patients, we found no differences between PM consultation and CC orders. There was a lower probability of DNR orders for Black/AA (adjusted odds ratio [aOR] 0.569; P = .049; confidence interval [CI]: 0.324-0.997) and other/unknown/multiracial patients (aOR: 0.389; P = .273; CI: 0.169-0.900). Comparing our earlier time period to the later time period, we found an increased usage of PM for all patients. Interaction P values suggest there were no differences between races regarding PM, DNR, and CC orders. Conclusions: PM use has increased over time at our institution. Contrary to the previous literature, there were no differences in the frequency of utilization of PM consultation between races. Further analysis to evaluate the usage of PM in the ICU setting in varying populations and geographic locations is warranted.

Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study.

BACKGROUND: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. AIM: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. DESIGN: Qualitative, retrospective study involving semi-structured interviews. Braun & Clarke's reflexive thematic analyses using a constructionist-interpretive approach were conducted. SETTING/PARTICIPANTS: A total of 15 adult women participants who decided to continue their pregnancies after learning of life-limiting foetal diagnoses were recruited from a Singaporean tertiary hospital. Interviews were conducted in-person or via video conferencing. RESULTS: Seven themes were synthesized from the data: (1) Internal upheaval - 'World turns upside down'; (2) Role of religion and spirituality in hope of miracles; (3) Support from family and close friends; (4) Navigating a fragmented healthcare system; (5) Value added by the perinatal palliative service; (6) Goodbye and grieving and (7) No regrets and other personal reflections. CONCLUSIONS: Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.

Determining massage dose-response to improve cancer-related symptom cluster of pain, fatigue, and sleep disturbance: A 7-arm randomized trial in palliative cancer care.

BACKGROUND: The efficacy of various massage doses in palliative cancer care settings is still debated, and no specific protocol is available. AIM: Evaluating response to various massage doses for symptom cluster of pain-fatigue-sleep. DESIGN: A 7-arm randomized-controlled trial with weekly massage for 4 weeks depending on the prescribed dose (15-, 30-, or 60-min; 2× or 3×/week) and a 4-week follow-up. The intensities of pain, fatigue, and sleep disturbance were measured using a 0-10 scale at nine-timepoint; baseline, weekly during the intervention, and the follow-up period. Then, the mean scores of the three symptoms were calculated as the symptom cluster intensity at each timepoint. IRCT.ir IRCT20150302021307N5. SETTING/PARTICIPANTS: Adults with cancer (n = 273) who reported all three symptoms at three oncology centers in Iran. RESULTS: The odds of clinical improvement (at least 30% reduction in symptom cluster intensity from baseline) increased with dose-escalation significantly [(OR = 17.37; 95% CI = 3.87-77.90 for 60-min doses); (OR = 11.71; 95% CI = 2.60-52.69, for 30-min doses); (OR = 4.36; 95% CI = 0.94-20.32, for 15-min doses)]. The effect durability was significantly shorter at 15-min doses compared to 30- and 60-min doses. The odds of improvement for doses 3×/week was not significant compared to doses 2×/week (OR = 12.27 vs OR = 8.34); however, the effect durability for doses 3×/week was significantly higher. CONCLUSIONS: The findings indicated that dose-escalation increases the efficacy of massage for the pain-fatigue-sleep symptom cluster. Although the 60-min doses were found to be more effective, the 30-min doses can be considered more practical because they are less costly and time-consuming. Our findings can be helpful to develop massage guidelines in palliative care settings. TRIAL REGISTRATION: Iranian Registry of Clinical Trials, IRCT20150302021307N5.

Experiences of parents of children with hypoplastic left heart syndrome during their treatment: a qualitative study.

AIM: To investigate the opinion and personal experience of parents of children born with Hypoplastic Left Heart Syndrome and what advice they would give to other parents who have to decide between treatment options. METHODS: We conducted a qualitative, descriptive and retrospective study by means of a survey directed to parents of children born with Hypoplastic Left Heart Syndrome in a tertiary hospital in Buenos Aires (Argentina). Their answers and data regarding medical procedures were analysed. RESULTS: Parents of thirteen out of sixteen patients with Hypoplastic Left Heart Syndrome were surveyed. Norwood surgery had been performed in all the patients, many had received other procedures, and five had died. In relation to the decision-making process, sixty-one percent of parents would recommend other parents to remain at peace after having done everything possible and 54% would suggest to not feel guilt despite the final result. None of the parents would recommend rejecting surgical treatment and choosing comfort care. CONCLUSION: The majority of parents of children with Hypoplastic Left Heart Syndrome would recommend continuing with the therapeutic effort in order to feel at peace and reduce feelings of guilt.

Simplified Legal Procedure for End-of-life Decisions in India: A New Dawn in the Care of the Dying?

Recent amendments to the onerous legal procedure laid down in the Landmark Supreme Court Judgment Common Cause vs The Union of India have aroused widespread interest. The new procedural guidelines of January 2023 appear workable and should ease ethical decision-making toward the end-of-life in India. This commentary provides the backdrop to the evolution of legal provisions for advance directives, withdrawal, and withholding decisions in terminal care. How to cite this article: Mani RK, Simha S, Gursahani R. Simplified Legal Procedure for End-of-life Decisions in India: A New Dawn in the Care of the Dying? Indian J Crit Care Med 2023;27(5):374-376.

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.

Impact of discriminant factors on the comfort-care of nurses caring for trans-arterial chemoembolisation patients.

PURPOSE: This study was conducted to identify the levels of comfort-care provided by trans-arterial chemoembolisation (TACE) nurses and examine the discriminant factors thereof. METHODS: Nurses (n = 146) with experience in caring for TACE patients, participated in this study. The data were collected using an online self-rated questionnaire and analysed with descriptive statistics and discriminant analysis. The discriminating factors included perception of post-embolisation syndrome and symptom interference, caring attitude, barriers to pain and nausea/vomiting management, and supportive care competence. RESULTS: The participants were classified into three groups, depending on the level of their comfort-care: "low" (n = 27), "moderate" (n = 88), and "high" (n = 31) comfort-care groups. One function significantly discriminated between the low and high comfort-care groups and correctly classified 79.3% of the participants in the cross-validation run. Supportive care competence (0.864), caring attitude (0.685), perception of symptom interference (0.395), perception of post-embolisation syndrome (0.321), and barriers to nausea/vomiting management (- 0.343) were significant discriminant factors of comfort-care. CONCLUSION: A low proportion of the participants provided high levels of comfort-care, which was determined by five discriminant factors. The study's findings imply that the development of supportive care competence, authentic human caring attitude, early detection of patients' symptoms and symptom interference, and the development of manuals and guidelines for removing barriers for nausea and vomiting are needed to improve the comfort-care of nurses caring for TACE patients.

Mortality from Aspiration Pneumonia: Incidence, Trends, and Risk Factors.

Aspiration pneumonia is a potentially preventable, aggressive type of pneumonia. Little is understood on the burden in mortality from aspiration pneumonia. Our objectives were to first examine the burden of mortality from aspiration pneumonia in the United States and second investigate comorbidities associated with aspiration pneumonia to understand risk factors. We conducted a case-control study of individuals who died of aspiration pneumonia matched to those who died of other causes. We analyzed all deaths in the United States using the Multiple Cause of Death Dataset from 1999 to 2017. Cases were matched with controls based on age, sex, and race. We calculated age-adjusted mortality rates, annual percentage changes in aspiration pneumonia mortality, and matched odds ratio comparisons. We identified a total of 1,112,944 deaths related to aspiration pneumonia from 1999 to 2017 or an average of 58,576 per year (age-adjusted mortality rate, 21.85 per 100,000 population; 95% confidence interval (CI) 21.78-21.92). Aspiration pneumonia was reported as the underlying cause of death in 334,712 deaths or an average of 17,616 deaths per year (30.1% of the total aspiration pneumonia-associated deaths). Individuals 75 years old or older accounted for 76.0% of aspiration pneumonia deaths and the age adjusted rate ratio was 161.0 (CI 160.5-161.5). Neurologic, upper gastrointestinal, and pulmonary conditions as well as conditions associated with sedative substances were more often associated with aspiration pneumonia-associated deaths. Aspiration pneumonia is the underlying cause or a cofactor in tens of thousands of deaths each year in the United States. Aspiration pneumonia-associated deaths are highly prevalent with advanced age and are associated with neurologic, upper gastrointestinal and pulmonary conditions.

Do all patients in the epilepsy monitoring unit experience the same level of comfort? A quantitative exploratory secondary analysis.

AIMS: To find out which variables may be associated with comfort of patients in an epilepsy monitoring unit. DESIGN: Exploratory, quantitative study design. METHODS: Data were collected from October 2018 to November 2019 in Austria and Southern Germany. A total of 267 patients of 10 epilepsy centres completed the Epilepsy Monitoring Unit Comfort Questionnaire which is based on Kolcaba's General Comfort Questionnaire. Secondary data analysis were conducted by using descriptive statistics and an exploratory model building approach, including different linear regression models and several sensitivity analyses. RESULTS: Total comfort scores ranged from 83 to 235 points. Gender, occupation and centre turned out to be possible influential variables. On average, women had a total comfort score 4.69 points higher than men, and retired persons 28.2 points higher than high school students ≥18 years. Comfort scores of younger patients were lower than those of older patients. However, age did not show a statistically significant effect. The same could be observed in marital status and educational levels. CONCLUSION: When implementing comfort measures, nurses must be aware of variables which could influence the intervention negatively. Especially, high school students ≥18 years should be supported by epilepsy specialist nurses, in order to reduce uncertainty, anxiety and discomfort. But, since the identified variables account only for a small proportion of the inter-individual variability in comfort scores, further studies are needed to find out additional relevant aspects and to examine centre-specific effects more closely. IMPACT: Nurses ensure patient comfort during a hospital stay. However, there are variables that may impair the effectiveness of the nursing measures. Our study showed that the experience of comfort was highly individual and could be explained by sociodemographic variables only to a limited extent. Nurses must be aware that additional factors, such as the situation in the individual setting, may be relevant.

Goals of Care for Patients with Severe Comorbid Illnesses Hospitalized for an Acute Deterioration.

How to cite this article: Bande B. Goals of Care for Patients with Severe Comorbid Illnesses Hospitalized for an Acute Deterioration. Indian J Crit Care Med 2022;26(4):414-415.

Neurosurgical patients admitted via the emergency department initiating comfort care measures: a prospective cohort analysis.

BACKGROUND: Given the serious nature of many neurosurgical pathologies, it is common for hospitalized patients to elect comfort care (CC) over aggressive treatment. Few studies have evaluated the incidence and risk factors of CC trends in patients admitted for neurosurgical emergencies. OBJECTIVES: To analyze all neurosurgical patients admitted to a tertiary care academic referral center via the emergency department (ED) to determine incidence and characteristics of those who initiated CC measures during their initial hospital admission. METHODS: We performed a prospective, cohort analysis of all consecutive adult patients admitted to the neurosurgical service via the ED between October 2018 and May 2019. The primary outcome was the initiation of CC measures during the patient's hospital admission. CC was defined as cessation of life-sustaining measures and a shift in focus to maintaining the comfort and dignity of the patient. RESULTS: Of the 428 patients admitted during the 7-month period, 29 (6.8%) initiated CC measures within 4.0 ± 4.0 days of admission. Patients who entered CC were significantly more likely to have a medical history of cerebrovascular disease (58.6% vs. 33.3%, p = 0.006), dementia (17.2% vs. 1.5%, p = 0.0004), or cancer with metastatic disease (24.1% vs. 7.0%, p = 0.001). Patients with a presenting pathology associated with cerebrovascular disease were significantly more likely to initiate CC (62.1% vs. 35.3, p = 0.04). Patients who underwent emergent surgery were significantly more likely to enter CC compared with those who had elective surgery (80.0% vs. 42.7%, p = 0.02). Only 10 of the 29 (34.5%) patients who initiated CC underwent a neurosurgical operation (p = 0.002). Twenty of the 29 (69.0%) patients died within 0.8 ± 0.8 days after the initiation of CC measures. CONCLUSION: CC measures were initiated in 6.8% of patients admitted to the neurosurgical service via the ED, with the majority of patients entering CC before an operation and presenting with a cerebrovascular pathology.

Comfort Care Homes: Pressures and Protocols in End-of-Life Care During the COVID-19 Pandemic.

Comfort care homes are community-run, residential homes that provide end-of-life care to terminally ill individuals who lack safe, secure housing and a reliable caregiver system. As nonprofit, non-medical facilities, these homes have faced both new and magnified challenges due to the COVID-19 pandemic. This article highlights the value of collaborative interagency partnerships and shares reflections on the unique pandemic pressures faced by comfort care homes. Innovative ideas for improving community-based end-of-life care and implications for social work practice are included.

Palliative care aspects of wound healing in complex patients: a case report.

DECLARATION OF INTEREST: The authors have no conflicts of interest to declare.

Mortality in severely injured patients: nearly one of five non-survivors have been already discharged alive from ICU.

BACKGROUND: Most trauma patients admitted to the hospital alive and die later on, decease during the initial care in the emergency department or the intensive care unit (ICU). However, a number of patients pass away after having been discharged from the ICU during the initial hospital stay. On first sight these cases could be seen as "failure to rescue" of potentially salvageable patients. A low rate of such patients might be a potential indicator of quality for trauma care on ICUs and surgical wards. METHODS: Retrospective analysis of the TraumaRegister DGU® with data from 2015 to 2017. Patients that died during the initial ICU stay were compared to those who were discharged from the initial ICU stay for at least 24 h but died later on. RESULTS: A total of 82,313 trauma patients were included in the TraumaRegister DGU®. In total, 6576 patients (8.0%) died during their hospital stay. Out of those, 5481 were admitted to the ICU alive and 972 patients (17.7%) were discharged from ICU and died later on. Those were older (mean age: 77 vs. 68 years), less severely injured (mean ISS: 23.1 vs. 30.0 points) and had a longer mean ICU length of stay (10 vs. 6 days). A limitation of life-sustaining therapy due to a documented living will was present in 46.1% of all patients who died during their initial ICU stay and in 59.9% of patients who died after discharge from their initial ICU stay. CONCLUSIONS: 17.7% of all non-surviving severely injured trauma patients died within the hospital after discharge from their initial ICU treatment. Their death can partially be explained by a limitation of therapy due to a living will. In conclusion, the rate of such late deaths may partially represent patients that died of potentially avoidable or treatable complications.

Pediatric Cardiology Specialist's Opinions Toward the Acceptability of Comfort Care for Congenital Heart Disease.

In order to evaluate physicians' willingness to seek legal action to mandate surgery when parents refuse surgery for various congenital heart lesions, we surveyed pediatric cardiologists and cardiovascular surgeons at 4 children's hospitals. We asked whether physicians would support parental refusal of surgery for specific heart defects and, if not, whether they would seek legal action to mandate surgery. We then analyzed associations between physicians' willingness to mandate surgery and national operative mortality rates for each lesion. We surveyed 126 cardiologists and 9 cardiac surgeons at four tertiary referral centers. Overall response rate was 77%. Greater than 70% of physicians would seek legal action and mandate surgery for the following lesions: ventricular septal defect, coarctation of the aorta, complete atrioventricular canal, transposition of the great arteries, tetralogy of Fallot, and unobstructed total anomalous pulmonary venous return. Surgery for all of these lesions has reported mortality rates of < 5%. Physicians were less likely to seek legal action when parents refused surgery for Shone complex, any single ventricle lesion, or any congenital heart disease accompanied by Trisomy 13 or Trisomy 18. Among experts in pediatric cardiology, there is widespread agreement about the appropriate response to parental refusal of surgery for most congenital heart lesions, and these lesions tended to be heart defects with lower surgical mortality rates. Lesions for which there was greater consensus among experts were those with the best outcomes. There was less consensus for lesions with higher mortality rates. Such surveys, revealing disagreement among expert professionals, can provide an operational definition of the current professional "gray zone" in which parental preferences should determine treatment.

Metasynthesis: Dying adults' transition process from cure-focused to comfort-focused care.

AIM: To describe and explain the process of transition from cure-focused to comfort-focused health care as perceived and reported by patients, family members, and healthcare providers. BACKGROUND: Moving into the last phase of life due to advanced illness constitutes a developmental transition with increased vulnerability for patients and family. DESIGN: Qualitative metasynthesis. DATA SOURCES: Medline, CINAHL, and PsycInfo databases searched from inception through March 2016. Primary research reports published from 1990 to 2015, using qualitative designs to report transition experiences of patients, family members, and/or healthcare providers were included. REVIEW METHODS: Key elements were extracted and organized into matrices. Findings from each report were analysed using qualitative coding. RESULTS: The sample was 56 unique reports from 50 primary studies. Patients and families emphasized the importance of receiving understandable information, emotional support, respect for personhood and control. The critical juncture of 'realizing terminality' preceded a transition to comfort-focused care. Subsequently, a shift in goals of care emphasizing comfort and quality of life could occur. Continued provision of information, effective support, respect and control promoted 'reframing perceptions' and capacity to embrace a changed identity. Reframing allowed patient and family to find meaning and value in this last phase of life and to embrace the opportunity to prepare for death, nurture relationships, and focus on quality of living. CONCLUSION: Understanding the developmental process that can be engaged by patients and families at the end of life provides a theoretical basis that can inform choice and timing of interventions to reduce suffering and enhance positive outcomes.

A Systematic Approach to Comfort Care Transitions in the Emergency Department.

BACKGROUND: Approximately 25-30% of Americans die within hospitals. An increasingly geriatric and chronically ill population arrive at emergency departments (EDs) for their terminal presentation. Many patients will not choose, nor are EDs obligated to deliver, futile care. Instead, aggressive comfort care may alleviate patient, family, and clinician distress. OBJECTIVES: To discuss best practice through a systematic approach to comfort care transitions for the dying ED patient. METHODS: Authors utilized a structured literature search conducted via PubMed (MEDLINE), Embase, and CINAHL databases, including studies from 1998 onward focusing on symptom palliation and coordination of care for acutely dying patients. DISCUSSION: Comfort care begins with the language used to introduce the transition. Frame choices to avoid creating feelings of familial abandonment. Prognostication in the dying process helps guide treatment planning and stewarding families. Symptom management in the actively dying patient involves diligent titration of medications as well as thoughtful ordering in de-escalation of life-support modalities. Compassionate extubation necessitates anticipation of postextubation dyspnea or airway loss, and therefore may require step-wise weaning of pulmonary support. Suffering at the end of life for patients and families is multidimensional, and is best approached with an interdisciplinary effort involving clinicians, social work, and chaplaincy. CONCLUSION: Comfort care deaths are a daily occurrence in the ED. A systematic approach to these transitions ensures optimal care for patients in their final hours and families' experience of these events.

Association between comfort and needs of ICU patients' family members: A cross-sectional study.

AIMS AND OBJECTIVE: To identify the family members' level of comfort and needs and to analyse the sociodemographic/clinical variables that influence this association. BACKGROUND: The needs of family members are important considerations in intensive care units. In this context, the needs will be assessed in five dimensions: information, safety, proximity, support and comfort. This study describes the association between comfort and needs of ICU patients' family members. DESIGN: Cross-sectional study developed at the adult ICU of a hospital within the state of São Paulo, in the period from July-September 2016. METHODS: We used the Critical Care Family Needs Inventory (INEFTI) Portuguese version and the comfort scale for critical care patient relatives (ECONF). RESULTS: In relation to INEFTI, the relatives assigned high importance to the needs (Median = 167), but not all of them satisfied (Median = 151). The comfort was low (Median = 3.6), and support was the most affected domain (Median = 2.78). The multivariate analysis indicated variables that influenced the comfort: marital status (ß = 0.80; p < 0.01), disease severity (ß = 0.03; p = 0.04), female sex (ß = 0.34; p = 0.01), highest educational attainment (ß = 0.37; p < 0.01), employment status (ß = 0.81; p < 0.01) and kinship (ß = 0.34; p < 0.01). Concerning the INEFTI scores, only age was statistically significant for importance (ß = 0.16; p < 0.01) and satisfaction (ß = -0.29; p = 0.04) of the family members' needs. In the multiple correspondence analysis, different proximities were identified for the variables comfort and needs. Greater ECONF scores were associated with family members with a higher educational degree, whose patients were stable, who attributed high levels of importance to the needs and who were housewives. CONCLUSIONS: Family members have needs that are considered important but not fully met. No direct correspondence between comfort and family needs was identified. RELEVANCE TO CLINICAL PRACTICE: In view of the lack of studies involving family members' comfort and needs, we believe that these results can guide nursing proposals focused on the family members, in line with the associations found among different variables that influenced the results.

Patient Reluctance to Discuss Pain: Understanding Stoicism, Stigma, and Other Contributing Factors.

Some patients are hesitant to disclose when they are experiencing pain. However, the reasons for this, such as stoicism and concern about being a bother to others, are poorly understood. If patient pain goes unrecognized during clinical encounters, patients may also be at greater risk for pain-related crises, use of hospice/palliative care on-call services, and in-patient transfers. This is an evidence-informed development of a practice-oriented conceptual model to understand and address patient reluctance to admit pain. We used a review of the available evidence to better understand the various factors that contribute to an unwillingness to disclose one's pain, create a conceptual model, and identify relevant assessment measures that may be useful to practitioners. Our review identified six primary attitudes and beliefs that contribute to patient reluctance to openly admit pain: (a) stigma; (b) stoicism; (c) cautiousness; (d) fatalism; (e) bother; and (f) denial. Four assessment measures that address elements of barriers to pain-related communication and four measures of nonverbal signs of pain were also identified and reviewed. Based on the model, social workers and other palliative care providers should consistently and vigilantly inquire about how comfortable patients are about discussing their own pain. Implications for practice and research are presented.

Achieving consensus and controversy around applicability of palliative care to dementia.

BACKGROUND: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. METHODS: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. RESULTS: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. CONCLUSIONS: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.