Background: The five Nordic countries with a population of 27M people form a rather homogenous region in terms of health care. The management of Head and Neck Cancer (HNC) is centralized to the 21 university hospitals in these countries. Our aim was to survey the current status of organization of palliative care for patients with HNC in the Nordic countries as the field is rapidly developing.
Materials and methods: A structured web-based questionnaire was sent to all the Departments of Otorhinolaryngology—Head and Neck Surgery and Oncology managing HNC in the Nordic countries.
Results: All 21 (100%) Nordic university hospitals responded to the survey. A majority (over 90%) of the patients are discussed at diagnosis in a multidisciplinary tumor board (MDT), but the presence of a palliative care specialist is lacking in 95% of these MDT’s. The patients have access to specialized palliative care units (n = 14, 67%), teams (n = 10, 48%), and consultants (n = 4, 19%) in the majority of the hospitals.
Conclusion: The present results show that specialized palliative care services are available at the Nordic university hospitals. A major finding was that the collaboration between head and neck surgeons, oncologists and palliative care specialists is not well structured and the palliative care pathway of patients with HNC is not systematically organized. We suggest that early integrated palliative care needs to be included as an addition to the already existing HNC care pathways in the Nordic countries.
BACKGROUND: Nurses' end of life (EoL) care focuses on direct (eg, physical) and indirect (e,g, coordination) care. Little is known about how much time nurses actually devote to these activities and if activities change due to support by specialized palliative care (SPC) in hospitalized patients.
AIMS: (1) Comparing care time for EoL patients receiving SPC to usual palliative care (UPC);(2) Comparing time spent for direct/indirect care in the SPC group before and after SPC.
METHODS: Retrospective observational study; nursing care time for EoL patients based on tacs® data using nonparametric and parametric tests. The Swiss data method tacs measures (in)direct nursing care time for monitoring and cost analyses.
RESULTS: Analysis of tacs® data (UPC, n = 642; SPC, n = 104) during hospitalization before death in 2015. Overall, SPC patients had higher tacs® than UPC patients by 40 direct (95% confidence interval [CI]: 5.7-75, P = .023) and 14 indirect tacs® (95% CI: 6.0-23, P < .001). No difference for tacs® by day, as SPC patients were treated for a longer time (mean number of days 7.2 vs 16, P < .001).Subanalysis for SPC patients showed increased direct care time on the day of and after SPC (P < .001), whereas indirect care time increased only on the day of SPC.
CONCLUSIONS: This study gives insight into nurses' time for (in)direct care activities with/without SPC before death. The higher (in)direct nursing care time in SPC patients compared to UPC may reflect higher complexity. Consensus-based measurements to monitor nurses' care activities may be helpful for benchmarking or reimbursement analysis.
BACKGROUND: Despite the documented and well known patient benefits of ACP, the completion of ACP, only a minority of patients, during the advanced or EOL stage of their illnesses, receive such care. The misconceptions about ACP for healthcare providers, such as nurses, might become potential barriers to the effective implication of ACP. Also, from the transcultural perspective, it is evident essential to explore Taiwanese nurses' attitudes, knowledge, and actions of ACP. The purposes of this study were to explore the implication of ACP or hospice care for nurses caring for non-cancer chronic illness patients at a regional teaching hospital in Taiwan; and, to identify predictors of those nurses' knowledge, attitudes, and actions toward ACP.
METHODS: This cross-sectional study with a purposive sample of 218 nurses was conducted at a teaching hospital in southern Taiwan. Structured questionnaires were employed and data were analyzed with descriptive statistics, t-test, one-way ANOVAs, Pearson's correlation and multiple regressions.
RESULTS: 16.1% of Taiwanese physicians actively initiated ACP issues or conversations with patients or their family members. Nurses' attitudes toward ACP were fairly positive but their knowledge about ACP was insufficient and actions of ACP were not positively executed. The predictors of ACP-Knowledge (ACP-K) included position title, education hours and lacking of educational training. The predictors of ACP-Attitude (ACP-A) included ACP-K and "fear of patient or family member not accepting", whereas ACP-A, position title, "patients do not feel necessary" and "not sure physician's concern" were the predictors of ACP-Act.
CONCLUSION: Continuous education and training for nurses regarding ACP needs to be improved by taking those predictors found in this current study into account, and more studies on the nurse's role in ACP also should be further examined.
TRIAL REGISTRATION: KAFGH 106-012. Date of registration 1 May 2017.
INTRODUCTION: The Centers for Medicare and Medicaid Services released the final payment rules for reimbursement of advance care planning (ACP) effective January 2016. In its first year, 23,000 providers nationwide submitted 624,000 claims using the Current Procedural Terminology codes 99497 and 99498. The objectives of our study were to 1) assess the frequency of ACP codes used at a single academic tertiary care center in Iowa, 2) determine when and by whom the codes were used, and 3) summarize ACP clinical notes.
METHODS: Using the electronic medical record data warehouse from a single tertiary teaching hospital and affiliated clinics, date of service, department where service was provided, provider name and type, patient medical record number, date of birth, and gender linked to the ACP codes 99497 and 99498 were collected. The content of ACP clinical notes were reviewed and summarized. Study period was from January 1, 2016 through September 19, 2018.
RESULTS: During the 33 months, code 99497 was used 17 times and code 99498 was never used. Code 99497 was successfully reimbursed 4 times.
DISCUSSION: Charges were not reimbursed if the ACP visits did not meet the minimum time requirement or were conducted by an individual not considered a qualified health care professional per Medicare rules.
CONCLUSION: ACP codes 99497 and 99498 were very rarely used at this tertiary care center during the initial 33-months after the Medicare rules went into effect. Interventions are needed to promote the use of ACP codes, so the time spent in important ACP discussions are properly compensated.
Objective: To evaluate a new intervention intended to increase referral rates from the emergency department (ED) to the palliative medicine service (PMS) in acute hospitals.
Methods: We conducted a quasi-experimental evaluation in an urban teaching hospital in Dublin, Ireland. Data were collected over two eight-week periods in November/December 2013 and May/June 2015, with the PALliative Medicine in the Emergency Department (PAL.M.ED.™) intervention implemented in the intervening period. All adults who were admitted to the hospital via the ED during the two time periods and who received a palliative care consultation during their hospital stay were included in the study. Our primary analysis evaluated the impact of PAL.M.ED.™ on PMS referral in the ED. Our secondary analysis evaluated the impact of PMS referral in the ED on length of stay (LOS) and utilization, compared to PMS referral later in the admission. We controlled for observed confounding between groups using propensity scores.
Results: PAL.M.ED.™ was associated with an increase in PMS referral in the ED (p < 0.005; odds ratio: 10.5 (95%CI: 3.8 to 28.7)). PMS referral in the ED was associated with shorter hospital LOS (p < 0.005; -10.9 days (95%CI: -17.7 to -4.1)).
Conclusions: Low PMS referral rates in the ED, and the poor outcomes for patients and hospitals that arise from admissions of those with serious illness, may be mitigated by a proactive intervention to identify appropriate patients at admission.
Objective: To determine perceptions of Jordanian critical care staff about obstacles and facilitators to end-of-life care.
Research methodology: The “National Survey of Critical Care Nurses’ Perceptions of End-of-Life Care” was adapted and distributed to 143 critical care nurses (n = 110) and physicians (n = 33) in two Jordanian hospitals. Nurses and physicians completed items about perceived obstacles to end-of-life care. Nurses only completed items about facilitators to end-of-life care.
Results: The overall response rate was 72.7% (n = 104/143). Seventy–six nurses (69.1%) and 28 physicians (84.5%) responded. Nurses and physicians agreed that the highest scoring obstacles were: ‘family members who do not understand what life-saving measures mean’ and the ‘poor design of critical care units’. Other highly scoring obstacles related to clinicians’ behaviours, characteristics and attitudes. Nurses perceived the highest scoring facilitator was ‘family members who accepted that the patient was dying’.
Conclusion: There is a need to further explore the issues underlying perceptions about clinicians’ behaviours, which were perceived to be key barriers to quality end-of-life care and to find acceptable solutions that fit with Islamic culture. It is the first time that the survey has been used to gather perceptions of doctors and nurses in a non-western culture.
BACKGROUND: The benefits of hospice palliative care (HPC) for end-of-life (EoL) patients have been widely acknowledged in recent years. There is still limited knowledge about cancer patients' willingness toward HPC. This study aimed to investigate the willingness of cancer patients to receive HPC and the influencing factors.
METHODS: A cross-sectional study was conducted with cancer patients enrolled from teaching hospitals in Taiwan. The questionnaire included demographic characteristics, EoL care preferences, and scales for measuring the willingness to receive HPC, HPC knowledge, and attitude towards HPC. Data were collected by senior nurses and they were analyzed using descriptive and a regression analysis.
RESULTS: A total of 148 valid questionnaires were collected. The participants indicated that they 'willing to receive' HPC (mean3.8 on a 5-point scale). The predictors for their willingness to receive HPC were knowledge about HPC (P = 0.001), positive attitude towards HPC (P = 0.008), preference for hospital death (P = 0.022), and preference for quality of life (P = 0.047) as the goal of EoL care. These factors explained 32.7% of the total variance in the willingness to receive HPC.
CONCLUSIONS: Cancer patients were generally willing to receive HPC. Clinician should discuss EoL care with them earlier. Develop appropriate educational strategies that can provide cancer patients with sufficient and tailored HPC information to develop their knowledge and to create a positive attitude about HPC is necessary, thereby to allow for early HPC intervention and to fulfill the patients' need for HPC.
Introduction: Les soins palliatifs constituent un nouveau concept dans la pratique des soignants au Bénin. Les objectifs de notre travail étaient d’évaluer la connaissance et de répertorier les pratiques infirmières en matière d’accompagnement des patients en fin de vie.
Matériels et méthodes: Il s’agit d’une étude transversale descriptive qui s’est déroulée du15/08 au 30/09/2014. Elle a concerné tous les infirmiers exerçant dans les services de médecine du centre national hospitalier universitaire Hubert-K.-Maga à Cotonou.
Résultats: Un total de 28 infirmiers a été enquêté. Seulement huit connaissaient la notion de fin de vie (soit 28,6 %), parmi lesquels sept avaient déclaré que les besoins principaux étaient de calmer la douleur (soit 87,5 %). Vingt-et-un infirmiers ont déclaré n’avoir jamais participé à un accompagnement en fin de vie (soit 75 %).
Conclusion: L’accompagnement des patients en fin de vie est méconnu par le personnel infirmier. Les besoins de formation du personnel dans ce domaine s’avèrent donc nécessaires.
Terminal lucidity is an unpredictable end-of-life experience that has invaluable implications in preparation for death. We retrospectively evaluated terminal lucidity at a university teaching hospital. Of 338 deaths that occurred during the study period (187 in the ICU and 151 in general wards), terminal lucidity was identified in 6 cases in general wards. Periods of lucidity ranged from several hours to 4 days. After experiencing terminal lucidity, half of the patients died within a week, and the remainder died within 9 days. More attention should be directed toward understanding terminal lucidity to improve end-of-life care in a meaningful way.
BACKGROUND: Professional societies call for integration of end-of-life discussions early in the trajectory of heart failure, yet it remains unclear where current practices stand in relation to these recommendations. We sought to describe the perceptions and attitudes of caregivers in cardiology regarding end-of-life situations.
METHODS: We performed a qualitative study using semi-directive interviews in the cardiology department of a university teaching hospital in France. Physicians, nurses and nurses' aides working full-time in the department at the time of the study were eligible. Participants were asked to describe how they experienced end-of-life situations. Interviews were recorded, transcribed and coded using thematic analysis to identify major and secondary themes.
RESULTS: All physicians (N = 16)(average age 43.5 ± 13 years), 16 nurses (average age 38.5 ± 7.6 years) and 5 nurses’ aides (average age 49 ± 7.8 years) participated. Interviews were held between 30 March and 17 July 2017. The main themes to emerge from the physicians’ discourse were the concept of cardiology being a very active discipline, and a very curative frame of mind was prevalent. Communication (with paramedical staff, patients and families) was deemed to be important. Advance directives were thought to be rare, and not especially useful. Nurses also reported communication as a major issue, but their form of communication is bounded by several factors (physicians’ prior discourse, legislation). They commonly engage in reconciling: between the approach (curative or palliative) and the reality of the treatment prescribed; performing curative interventions in patients they deem to be dying cases causes them distress. The emergency context prevents nurses from taking the time necessary to engage in end-of-life discussions. They engage in comfort-giving behaviors to maximize patient comfort.
CONCLUSION: Current perceptions and practices vis-à-vis end-of-life situations in our department are individual, heterogeneous and not yet aligned with recommendations of professional societies.
Outcome measurement is becoming increasingly important in palliative care both in research as well as clinical care. Regular ongoing assessments in palliative care clinical practice have the potential to enable monitoring of the patient's situation, assess the effectiveness of interventions, assess symptoms accurately and focus on patients' priorities. Implementing routine outcome measurement into clinical practice remains a challenge. Therefore, the aim of this article is to describe the process of implementing routine outcome measurement into daily clinical work in a university palliative care unit. According to the recommendations of Antunes, the following steps were used to implement routine outcome measurement in clinical care in a university palliative care unit. (I) Selection of outcomes of interest by the clinical leads and head of department: most prevalent symptoms; psychological, practical and spiritual concerns, functional status, carer burden; (II) selection of outcome measures: Integrated Palliative Care Outcome Scale (IPOS), phase of illness, Australian Karnofsky Performance Status; (III) educational component about the measure and how to use results: team meetings and team retreat with introduction of outcome measurement in palliative care, chosen measures and role plays with use of measures; (IV) selection of responsible consultant on the ward as coordinator and facilitator for outcome measurement; (V) who applies the measure and its periodicity. Implementation of outcome measurement in clinical routine is feasible following a structured process. Nevertheless, it is a time consuming and long-lasting process which needs continuous attention. However, the benefits outweigh the burden of implementation and it is a task worthwhile undertaking.
OBJECTIVES: The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits.
METHODS: This retrospective chart review was conducted from April 1, 2007, to March 31, 2012, in a tertiary care pediatric university-affiliated hospital. Eligible patients had initial PPC consultations during the study period; all ED visits by these patients were included. Data were drawn from the ED's electronic data system and patient's medical chart.
RESULTS: A total of 290 new patients were followed by the PPC team, and 94 (32.4%) consulted the ED. Pediatric palliative care patients who consulted the ED had a median age of 7 years and baseline diagnoses of cancer (39.4%) or encephalopathy (27.7%). No patients died in the ED, but 36 (38.3%) died in hospital after an ED visit and 18 (19.1%) within 72 hours of admission. Pediatric palliative care patients consulted 219 times, with a median number of visits per patient of 2 (range, 1-8). They presented acutely ill as per triage scales. Reasons for consultation included respiratory distress/dyspnea (30.6%), pain (12.8%), seizure (11.4%), and fever (9.1%). Patients were often admitted to wards (61.2%) and the pediatric intensive care unit (7.3%). Two thirds (65.7%) of patients had signed an advanced care directive at the time of their visit. Discussions about goals of care occurred in 37.4% of visits.
CONCLUSIONS: Pediatric palliative care patients present to the ED acutely ill, often at their end of life, and goals of care are not always discussed. This is a first step toward understanding how to improve PPC patients' ED care.
Background: The implementation of standardised, valid and reliable measurements in palliative care is subject to practical and methodological challenges. One aspect of ongoing discussion is the value of systematic proxy-based assessment of symptom burden in palliative care. In 2011, an expert-developed proxy-based instrument for the assessment of symptom burden in palliative patients, the Palliative Symptom Burden Score (PSBS), was implemented at the Specialised Palliative Care Unit of the University Medical Centre in Dusseldorf, Germany. The present study investigated its feasibility, acceptance and psychometric properties.
Methods: The PSBS was rated by nursing staff three times a day over 5 years (N = 820 patients). Feasibility and nurses’ acceptance of PSBS were analysed. Structural validity was investigated by principal component analysis. Construct validity was examined via cross-validation with the Hospice and Palliative Care Evaluation checklist. Discriminative validity of the PSBS was analysed by means of Kruskal-Wallis test of patients’ performance score. Reliability of the PSBS was evaluated by internal consistency analysis, test-retest and split-half-reliability. Inter-rater reliability was investigated by observer agreement of nurses’ ratings of symptom burden within a day. Sensitivity to change was analysed by Wilcoxon test with repeated measures of the PSBS before and after palliative complex treatment.
Results: A high degree of acceptance and the feasibility of a high-frequency proxy-based symptom burden assessment approach were demonstrated. There were low rates of missing values and no indications of the adoption of prior ratings. PSBS in its present form demonstrates good structural and construct validity (rs = .27–.79, p’s < .001) and high sensitivity to changes in symptom burden (p’s < .01, except sweating), but unsatisfactory reliability (a = .41–.67; test-retest: rs = .30–.88; p’s < .001; split-half: rs = .69; p < .001; inter-rater: n.s.).
Conclusions: The study presents a framework for the post hoc validation of an already existing documentation tool in palliative care. This study supports the notion that PSBS might not be reflective of an overall construct and will therefore require further development and critical comparison to other already established symptom burden instruments in palliative care.
PURPOSE: Involvement of palliative care experts improves the quality of life and satisfaction with care of patients who are in the last stage of life. However, little is known about the relation between palliative care expert involvement and quality of dying (QOD) in the hospital. We studied the association between palliative care team (PCT) consultation and QOD in the hospital as experienced by relatives.
METHODS: We conducted a secondary analysis of data from a prospective study among relatives of patients who died from cancer in a university hospital and compared characteristics and QOD of patients for whom the PCT was or was not consulted.
RESULTS: 175 out of 343 (51%) relatives responded to the questionnaire. In multivariable linear regression PCT was associated with a 1.0 point better QOD (95% CI 0.07-1.96). In most of the subdomains of QOD, we found a non-significant trend towards a more favorable outcome for patients for whom the PCT was consulted. Patients for whom the PCT was consulted had more often discussed their preferences for medical treatment, had more often been aware of their imminent death and had more often been at peace with their imminent death. Further, patients for whom the PCT was consulted and their relatives had more often been able to say goodbye. Relatives had also more often been present at the moment of death when a PCT had been consulted.
CONCLUSION: For patients dying in the hospital, palliative care consultation is associated with a favorable QOD.
The aim of this study was to determine the attitudes of nurses working in two university hospitals located in the west and east of Turkey toward care of dying individual as well as religious and cultural factors that influence their attitudes. The descriptive and comparative study was conducted with a total of 189 nurses who were working in adult inpatient clinics of two university hospitals in western (101 nurses) and eastern (88 nurses) Turkey between July and November 2016. The data were obtained by using the questionnaire and Frommelt Attitudes Toward Care of the Dying Scale. As a result of this study, it was determined that in terms of the status of receiving training the end-of-life care the majority of nurses received this training; however, this rate was higher (51.0%) in nurses working in the eastern hospital (p = 0.025). The nurses working in the east (51.6%) were determined to have more problems during caregiving due to their religious and cultural beliefs, the most frequent problem they experienced was “being uncomfortable due to privacy when giving care to patients from opposite gender” (57.1%). The emotions felt mostly by nurses during the care of dying patient were grief (nurses in the east = 48.5%, nurses in the west = 51.5%) and despair (nurses in the east = 40.4%, nurses in the west = 59.6%). Nurses working both in the east (98.27 ± 7.71) and in the west (97.19 ± 8.99) were determined to have positive attitude toward death, and there was no statistically significant difference between both groups in terms of the mean scores of the Attitudes Toward Care of the Dying Scale (p = 0.373). In accordance with these results, it is recommended to focus on death issues in end-of-life care during the nursing education and to support nurses with in-service trainings regularly after the graduation.
Introduction: The number of end-of-life situations encountered in cardiology is rising.
Objective: We investigated perceptions and attitudes of medical and paramedical staff regarding end-of-life situations in a qualitative study.
Methods: Single-centre, qualitative study using semi-directive interviews with physicians, nurses and nurses’ aides in a university hospital cardiology unit. Participants were invited to describe experiences and feelings about end-of-life situations. Verbatim was analysed using thematic analysis.
Results: 13 physicians, 16 nurses and 5 nurses’ aides were interviewed. Main themes were: frequency, type of death, value of patient's life, communication, advance directives (AD), consideration of patient's wishes. The majority felt that the end-of-life situations are increasingly frequent, but their management has improved. Cardiology was felt to be a discipline where death is generally rapid; otherwise, for patients with end-stage heart failure, the course of disease allows time to anticipate end of life. The perceived value of the patient's life plays a role in the level of therapeutic engagement. Communication was felt to be key to ensuring that patient, family and healthcare workers (HCW) are all in agreement regarding clinical status and likely outcome. Poor communication was felt to engender suffering both among HCW and families; lack of time was cited as a frequent cause. AD were not unanimously considered useful; some felt that discussing end-of-life may be more harmful than helpful. AD remain infrequent in our unit. The patient's wishes are taken into account if possible, but some believe the patient is not qualified to know what can be done, and in such cases, their wishes may be disregarded as inappropriate to the clinical situation.
Conclusions: Most felt that end-of-life is managed better in terms of pain relief and communication. Poor communication remains prevalent and can be a source of suffering. Improving these points should improve overall quality of care.
OBJECTIVE: Most deaths occur in the pre-hospital setting, whereas mortality in the emergency department (ED) is low (<1%). However, our clinical impression is that some patients are being transported to hospital in devastating conditions with no likelihood of survival, but demanding extensive hospital resources. The decision on whether to transport a dying person to hospital or not is a difficult task for emergency medical services (EMS) personnel. As there is little epidemiological data about these patients, this paper aims to describe this special population.
METHODS: Retrospective cross-sectional study on adult patients transported by ground ambulance to the ED of a Swiss university hospital, who died during their stay in the ED between January 2008 and December 2012. Data was collected on the basis of ambulance report forms and discharge summaries of the ED.
RESULTS: One hundred and sixty-one patients were analysed. Most deaths were due to cardiovascular diseases (43%). Only 9% of patients died of trauma. The median age was 70 years (IQR 56-81 years) and 70% (n = 112) were men. Trauma patients were significantly younger (median age 55 years, p<0.001). The overall mortality rate was 0.9% for all patients transported by EMS to the ED. About one third of all patients received cardiopulmonary resuscitation (CPR) from bystanders (n = 53). The most common electrocardiogram (ECG) findings were asystole (n = 57) and pulseless electrical activity (n = 91). Fifty percent (n = 64) of the resuscitated patients were defibrillated. Three quarters (n = 115, 72%) of all patients were intubated on site. The mechanical chest compression device Lucas™2 was mainly used in cases of cardiovascular or uncertain cause of death and did not reduce the operating time on site.
CONCLUSION: The low ED mortality rate of 0.9% shows that only a few dying patients are transported to hospital. However, transport to hospital has to be carefully evaluated, especially for elderly patients with asystole or PEA due to medical conditions. The low CPR rate from bystanders demonstrates that public CPR training should be promoted further. The use of Lucas™2 did not reduce the operating time on site. For further investigations, comparison with survivors would be needed.
BACKGROUND: Knowledge of the factors associated with the decision to withdraw or withhold life support (WWLS) in brain-injured patients is limited. However, most deaths in these patients may involve such a decision.
OBJECTIVES: To identify factors associated with the decision to WWLS in brain-injured patients requiring mechanical ventilation who survive the first 24 h in the ICU, and to analyse the outcomes and time to death.
SETTINGS: Twenty French ICUs in 18 university hospitals.
PATIENTS: A total of 793 mechanically ventilated brain-injured adult patients.
MAIN OUTCOME MEASURES: Decision to WWLS within 3 months of ICU admission, and death or Glasgow Outcome Scale (GOS) score at day 90.
RESULTS: A decision to WWLS was made in 171 patients (22%), of whom 89% were dead at day 90. Out of the 247 deaths recorded at day 90, 153 (62%) were observed after a decision to WWLS. The median time between admission and death when a decision to WWLS was made was 10 (5 to 20) days vs. 10 (5 to 26) days when no end-of-life decision was made (P < 0.924). Among the 18 patients with a decision to WWLS who were still alive at day 90, three patients (2%) had a GOS score of 2, nine patients (5%) had a GOS score of 3 and five patients (3%) a GOS score of 4. Older age, presence of one nonreactive and dilated pupil, Glasgow Coma Scale less than 7, barbiturate use, acute respiratory distress syndrome and worsening lesions on computed tomography scans were each independently associated with decisions to WWLS.
CONCLUSION: Using a nationwide cohort of brain-injured patients, we observed a high proportion of deaths associated with an end-of-life decision. Older age and several disease severity factors were associated with the decision to WWLS.
BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed.
OBJECTIVE: This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups.
DESIGN/SETTING/SUBJECTS: A cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs.
RESULTS: The comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care.
CONCLUSION: A substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.
BACKGROUND: Serial Palliative Performance Scale (PPS) assessments may predict functional decline and prognosis in cancer and noncancer patients and help with end-of-life decision making.
OBJECTIVE: To evaluate the functional status of using serial PPS assessments of patients being assisted in collaboration with the palliative care team (PCT).
DESIGN: Prospective cohort pilot study.
MEASUREMENTS: The sample consisted of 64 cancer and noncancer inpatients being assisted in collaboration with the PCT during the period from 2012 to 2016 (included 12 months). Patients' PPS scores were assessed in three sequential stages: prehospital, first PCT assessment, and outcome (discharge, transference to another unit or death). Functional performance was classified in categories as stable (PPS scores between 70% and 100%), transitional (PPS scores between 40% and 60%), and end of life (PPS scores between 10% and 30%).
RESULTS: The mean PPS score during the three assessment stages (respectively, 60.5%, 38.9%, and 25.9%) was significantly different (p < 0.001). Cancer patients had higher PPS scores than noncancer patients; however, both groups exhibited a functional decline along the hospital stay. In both groups there was a negative correlation between the time frame between the different assessment stages and PPS scores (respectively, Pearson -0.4 and -0.6; p < 0.01). The survival curve of the first palliative assessment stage demonstrated earlier death in patients in the end-of-life category.
CONCLUSION: Serial PPS assessments are feasible and predicted functional decline in cancer and noncancer patients in this sample. Cancer patients exhibited higher initial functional scores but both cancer and noncancer patients declined in functionality along hospitalization. Earlier deaths occurred in the terminal PPS category than in the transitional PPS category.