Palliative Team Research Articles

Palliative team involvement in end-of-life care for Jewish and Muslim children in Jerusalem: A unique clinical and cultural context.

Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out to describe clinical and cultural characteristics of pediatric end-of-life patients in a majority Jewish and Muslim country with religious and legal constraints around end-of-life care. We conducted a retrospective chart review of 78 pediatric patients who died during a 5-year period and could potentially have utilized pediatric palliative care services. Patients reflected a range of primary diagnoses, most commonly oncologic diseases and multisystem genetic disorders. Patients followed by the pediatric palliative care team had less invasive therapies, more pain management and advance directives, and more psychosocial support. Patients from different cultural and religious backgrounds had similar levels of pediatric palliative care team follow-up but certain differences in end-of-life care. In a culturally and religiously conservative context that poses constraints on decision-making around end-of-life care, pediatric palliative care services are a feasible and important means of maximizing symptom relief, as well as emotional and spiritual support, for children at the end of life and their families.

Abstract P5-07-11: Referral patterns of metastatic breast cancer patients to Palliative Care team at a Cancer Center in Brazil

Abstract Introduction: Breast cancer is the most common cancer in women and the leading cause of cancer- related death in women worldwide. The high prevalence of physical and psychosocial suffering among breast cancer patients and their families justifies the need for an early interdisciplinary approach by a palliative care team. The effectiveness of early palliative care for patients with advanced cancer has been demonstrated in many studies. Early referral to outpatient palliative care services improves symptom control, reduces suffering and improves quality of end-of-life care. Aim: Evaluation of referral patterns of metastatic breast cancer patients to the outpatient embedded palliative care team. Methods: We retrospectively retrieved data from electronic medical records of patients who were treated at a private community oncology practice in Brazil who died from metastatic breast cancer during the years of 2018 until 2021.We evaluated the patient’s follow-up time by the palliative care team (follow-up > 12 weeks or not) and the year of referral to the service (pre-2020 vs 2020 and later) associated to the service referral type: Late referral (more than 8 weeks of metastatic diagnosis) or early referral. Each group was followed-up by cancer physicians and after referral was also followed-up by a palliative care multidisciplinary team who regularly evaluated cancer patients during their treatments at outpatient setting. During COVID-19 pandemic, some patients were evaluated by telemedicine appointments. We performed univariate comparisons analysis by Fisher’s Exact Test. p < 0.1 was deemed as statistically significant. Results: Of the 211 patients whose data were assessed, 99 patients were referred to Palliative Care team before 2020 and 112 patients after 2020. 13.1% of patients pre-2020 received early palliative care versus 33.9% of patients in the post-2020 referral group, resulting in a 3.37-fold odds of an early palliative care integration after 2020 (OR 3.37, CI95: 1.61 – 7.45; p< 0.001). Overall, 30.4% of longer follow-up patients were an early referral versus 19.3% of the shorter follow-up, resulting in an 82% greater chance (OR 1.82, CI: 0.92-3.63; p< 0.1) of prolonged assistance with early referral. Conclusions: In this analysis, early palliative care integration for patients with metastatic breast cancer has increased after 2019 despite the COVID-19 pandemic, leading to prolonged time of accompaniment by the multidisciplinary palliative care team. This suggests that even in the face of this challenging moment, a mature and consolidated service is offered by the palliative care team. Also, according to previous data in literature, prematurely integration show signs of correlation with better quality of life and death, supporting early palliative care for this group of patients. However, further work is needed to examine the effect of this care model in our cohort. Table: Palliative Care Assistance by time-referral Citation Format: Sarah A. GOMES, Danielle N. Silva, Thais Passarini, Julia A. Petrocchi, Marcela M. de Paula, Julia S. de sá, MatheusCosta e Silva, Tatiana A. Coelho, Rafaella L. de Aquino, Flávia S. Sorice, Patrícia Santos, Daniela Madureira, Erika Martins, Heloísa Cruz, Bruno L. Ferrari. Referral patterns of metastatic breast cancer patients to Palliative Care team at a Cancer Center in Brazil [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P5-07-11.

End-of-Life Care of Acute Myeloid Leukemia Compared with Aggressive lymphoma in Patients Who Are Eligible for Intensive Chemotherapy: An Observational Study in a Japanese Community Hospital.

Patients with hematological malignancies (HMs) are reported to receive more aggressive care at the end of life (EOL) than patients with solid tumors. However, the reasons behind this occurrence are not fully understood. To examine whether the care at EOL for HMs is mainly because of the disease characteristics or hematologists' attitudes and systems of care, we compared the EOL care of patients with acute myeloid leukemia (AML) and diffuse large B cell lymphoma (DLBCL). We retrospectively analyzed the EOL care of patients with AML and DLBCL younger than 80 years who were receiving combination chemotherapy at a city hospital in Japan. Fifty-nine patients with AML and 65 with DLBCL were included. Those with AML received chemotherapy more often within their last 30 days (48% vs. 19%, p < 0.001) and 14 days (37% vs. 1.5%, p < 0.001) of life, and consulted the palliative team less frequently (5.3% vs. 29%, p < 0.001). In the last 3 years, the mortality rate in hematological wards decreased from 74% to 29% in the DLBCL group, but only from 95% to 90% in the AML group. In multivariate analysis, AML (odds ratio [OR] 0.065) and death before 2018 (OR, 0.077) were significant factors associated with reduced referrals to specialized palliative teams. Patients with AML tend to have lesser access to specialized palliative care and fewer options for their place of death than those with DLBCL. Detailed EOL care plans are needed for these patients, considering the characteristics of the disease.

Challenges experienced by GPs when providing palliative care in the UK: a systematic qualitative literature review.

GPs in the UK will face increased palliative care demands in the coming years. Understanding what makes providing palliative care difficult for GPs is an important step to planning future services, but currently there is an absence of synthesised literature addressing this area. To identify the range of issues that affect GPs' provision of palliative care. A qualitative systematic review and thematic synthesis of studies exploring GPs' experiences of providing palliative care in the UK. Four databases (MEDLINE, Embase, Web of Science, and CINAHL [Cumulated Index to Nursing and Allied Health Literature]) were searched on 1 June 2022 to identify relevant primary qualitative literature published between 2008 and 2022. Twelve articles were included in the review. The following four themes were identified that affect GPs' experiences of providing palliative care: lack of resources to support palliative care provision; fragmented multidisciplinary team (MDT) approach; challenging communication with patients and carers; and inadequate training to address the complexities of palliative care. Pressures caused by increasing workloads and a lack of staffing combined with difficulty accessing specialist teams impeded GPs' provision of palliative care. Further challenges were deficiencies in GP training, and a lack of patient understanding or unwillingness to engage in palliative care discussions. A multifaceted approach focusing on increased resources, improved training, and a seamless interface between services, including improved access to specialist palliative teams when necessary, is needed to address the difficulties that GPs face in palliative care. Regular in-house MDT discussion of palliative cases and exploration of community resources could generate a supportive environment for GPs.

Logistic Regression and Machine Learning Models for Predicting Whether Intensive Care Patients Who Are Alert and Without Delirium Remain As Such for at Least Two More Days.

Background Some intensive care unit patients are alert and without delirium for atleast two consecutive days. These patients, like other critically ill individuals, are at risk for dignity-related distress. An interval ofat least two days would provide for apalliative care multidisciplinary team to be consulted in the late morning or afternoon of day one and visit the next day. An assessment would include the administration of the validated Patient Dignity Inventory in a reflective manner. To determine whether dignity-related distress can be identified and treated during patients' intensive care unit stay, we evaluated whether asubstantive fraction of such patients (≥5%) have asubstantial (>90%) probability ofremaining alert and without delirium in the intensive care unit for at least four consecutive days. Methods The retrospective cohort study used data from one large teaching hospital in the United States of America, from 2012 to June 2022. The inclusion criteria were: a)adults, b)present in an intensive care unit at 12 PM one day and continually sofor the next 48 hours, c)during those two days had every Riker sedation-agitation scale score "4, calm and cooperative," and d) during those two days had all Confusion Assessment Method for the Intensive Care Unit (CAM-ICU) scores negative (i.e., no delirium) and all Delirium Observation Screening Scale (DOS) scores less than three (i.e., no delirium). Results Among the 10,314 patients alert and without delirium in an intensive care unit over two-day periods that included threesuccessive 12PMs, 3,826 (37%) maintained this status for at least two successive 12PMs. Six patient characteristics (e.g., hemodynamic infusion or ventilatory support) had value in predicting those 37% ofpatients. However, logistic regression and classification models each predicted a few (≈0.2%) patients with >90% probability of maintaining these criteria. Forecasts were inaccurate for nearly all patients remaining alert and without delirium in the intensive care unit (≈37%) because the models predicted no patient alert, without delirium, and in the intensive care unit for twodays would remain so for at least four days. That ≈63% accuracy was improved upon by random forest machine learning, but only with ≈3% improvement. Conclusion Although many intensive care unit patients remain alert and without delirium for several consecutive days, each patient has a high daily probability of intensive care unit discharge or deterioration in medical condition. Therefore, the results of our prediction modeling show that care models for the assessment and treatment of patients with intensive care unit-associated dignity-related distress should not rely solely on the intensive care unit team but instead should be taken from the perspective ofthe entire hospitalization.

Palliative Care Needs Assessment for Pediatric Complex Care Providers.

Children with medical complexity (CMC) are often cared for by both complex care and palliative care pediatric teams. No prior research has investigated the relationship between these two disciplines. The purpose of this article is to investigate challenges that complex care programs face in caring for children with medical complexity (CMC), as well as to explore whether identified challenges could be met through collaboration with pediatric palliative care or additional training for complex care teams. Medical providers who self-identified as providing clinical care to children with medical complexity were asked to complete an online anonymous survey. Subjects were recruited through a Complex Care listerv. Data were analyzed using descriptive statistics. 85 subjects completed the survey, of whom 87.1% (n=74) were physicians, and 12.0% (n=11) were nurse practitioners. Subjects reported several challenges in caring for CMC, including symptom management, establishing goals of care, advance care planning, and coordination of care. A majority of subjects reported benefitting from palliative care consultative assistance in each subject area. Most subjects described their relationship with palliative care as a close partnership with frequent overlap. The evolving field of pediatric complex care is associated with an array of challenges in caring for CMC. Many of these challenges include competency areas where palliative care providers receive concerted training. Our research suggests greater palliative care involvement in the CMC population can benefit complex care teams and patients, given the expertise palliative providers can bring to the population and the discipline of complex care.

Palliative Medicine: Past - Present - Future

Modern medicine is divided into three categories, namely preventive, curative and palliative. Palliative medicine and palliative care focus on people suffering from progressive incurable diseases with an expected fatal outcome, as well as their family members. It is conducted by an interdisciplinary palliative team at all levels of health care. Palliative care is a broader term than palliative medicine, as it encompasses other activities carried out by social welfare institutions as well as civil society organizations, religious institutions and other stakeholders in the community. Although elements of the palliative approach have been encountered throughout history since the beginning of medical treatment, in the last fifty years we have witnessed the rapid development of palliative medicine as a distinct specialization and subspecialisation in many countries around the world. Palliative care is a civilizational step forward and a true example of person-centered medicine. Given the aging population and the growing technological capabilities of modern medicine, we expect a large increase in the need for palliative care which requires the active contribution of all participants involved in creating and implementing social and health policies, both locally, nationally and internationally. This paper presents the historical development and current state of palliative medicine in the world with special emphasis on the situation in Croatia. Key words: palliative medicine, palliative care, palliative team, quality of life, strategic plans, person-centered medicine, total pain, education

Oncoguía de cuidados paliativos 2023

Palliative care in oncology focuses on improving patients' quality of life with advanced cancer by controlling physical, psychological, and spiritual symptoms during their illness. It can be started as soon as advanced neoplasia is diagnosed, combined with disease-modifying therapies. This approach also includes the accompaniment of the family members by guiding the patient's care and providing psychological support to relatives of patients. The integration of palliative care in oncology must be flexible according to the type of oncological care provided and adapted to the level of care where it is necessary. In these guidelines, we describe the implementation of palliative medicine at Instituto Nacional de Cancerología (INCan). This gradual process began with the care of patients at the end of life. It is being integrated early into advanced cancer care and psychological attention and adapted to the patient's needs as we did during COVID-19. In the INCan model, the palliative cancer team works with the medical oncologist, surgical oncologist, radio-oncologist, and hemato-oncologist at all levels of care. Oncoguía de cuidados paliativos 2023 also incorporates the experiences and recommendations of teams from different hospitals that care for pediatric, young adults, and geriatric cancer patients in the Mexican Health System. Likewise, referral criteria and pharmacological resources are also included. Its objective is to provide an essential guide and contribute to the standardization of criteria.

Opioids and constipation therapy in the last week of life: Their impact on patients, caregivers, and the location of death.

The use of opioids to control pain at the end of life may cause constipation, a symptom that can negatively influence the well-being of patients and caregivers. The main aim of this study was to evaluate the impact of constipation on symptomatic control and patients' overall quality of life at this stage. A particular focus was placed on opioids. We also intended to investigate whether constipation and caregiver fatigue is related to the place of death (hospital vs home). The approach of 121 patients followed in 2021 in their last week of life by a home team specialized in palliative care was analyzed in an observational, retrospective, non-interventional study. The patients were followed up for an average of 39.7 days. A total of 82.6% wished to die at home, which occurred in 74% of the cases. The constipation prevention protocol reduced constipation by 55.1%. It seems that morphine is more related with constipation and tapentadol seems to reduce constipation induced by opioids. Patients tended to die in hospitals when their caregivers were exhausted; however, it was not possible to determine a cutoff point using the Zarit scale, which was used to assess caregiver burden. Constipation in the last week of life does not seem to influence the well-being of patients or their caregivers significantly and the individualization of intensive treatment of constipation is needed. Different opioids have different probabilities of causing adverse effects such as constipation. Future special support mechanisms can be created and activated for the most tired caregivers to avoid exhaustion and promote death at home, if that is the patient's will.

Omgaan met zorgweigering bij een persoon met een ernstige psychiatrische aandoening en een levensbedreigende ziekte: een casusbespreking

Dealing with refusal of care by patients with a severe psychiatric disorder in combination with a life-threatening condition: a case report Providing good care for persons with a severe psychiatric disorder in combination with a life-threatening condition is a major challenge for health care providers. By means of a case report, the authors analyze the situation of a 65-year-old woman with Korsakov’s disease, depressive symptoms and aplastic anemia. She refuses to be examined and treated, despite many efforts on the part of the caregivers and relatives, as well as the seriousness of the situation. The team has to switch from a curative to a palliative approach in a short space of time. Various areas of tension are assessed: appraising the decision-making capacity of the person requesting care, dealing with refusal of care in a life-threatening situation, and involving and coordinating the various parties concerned, including the psychiatric and somatic care providers, administrator and family. The case uniquely illustrates the challenges described in international literature and recent local studies. The authors plead for the importance of the liaison function between psychiatric and somatic care and the central role of the general practitioner associated with the psychiatric facility. The careful clarification of the legal capacity of the patient who refuses life-saving care, the added value of ethical consultation in order to come to a supported approach and to channel moral distress, and the involvement of a palliative support team within a psychiatric setting are also crucial elements in the approach.

What Palliative Patients and their Carers Need at Home and what a Primary Health Care Team can Offer - First Pilot Study in Slovenia.

Spending one's last days and dying at home is a common wish of people with a life-limiting illness. Home-based palliative care is essentially organised at the primary level to meet the needs of palliative patients and their carers. The aim of this study was to identify the characteristics of home-based palliative care, focusing on those who identify palliative patients, what their needs are and how this affects their length of life and site of death. This retrospective cohort study analysed routinely collected notes of patients enrolled in home-based palliative care between 2015 and 2021. Palliative care was provided by a primary health care team in a predominantly rural area. This study included 107 palliative patients, aged 71±11.4 years, 94% of whom had cancer. They were enrolled in palliative care by their primary care team or by hospital staff. The enrolment by hospital staff (3%) resulted in significantly shorter survival (p=0.008). Patients lived an average of 66 days, and 65% of patients died at home. Home-based palliative care was found to respond to both basic and complex palliative medical needs, but was weaker in addressing socio-economic, psychological or spiritual issues. This exemplary primary-level palliative team provided home-based palliative care that has improved over the years in terms of all the observed quality indicators: early enrolment, the proportion of patients dying at home and the ability to address needs. Specialised mobile palliative teams, hospitals and other palliative care settings complement home-based palliative care.

Exploring the Barriers and Facilitators Experienced by Palliative Health Care Providers Working with Patients Experiencing Homelessness during the COVID-19 Pandemic.

Patients experiencing homelessness not only have higher rates of medical complexity, comorbidity, and mortality, but also face barriers to accessing palliative care services. In structurally vulnerable populations with palliative care needs, these barriers are compounded, creating significant challenges for both patients and providers that have important health equity implications. The aim is to explore the experiences of palliative care providers working with patients experiencing homelessness during the COVID-19 pandemic and understand the barriers they faced in providing care, as well as facilitators that aided in the success of their teams. Seven health care providers from two Canadian palliative outreach teams involved in delivering palliative care services to patients experiencing homelessness during the COVID-19 pandemic participated in audio-recorded and transcribed videoconferencing interviews. Analysis was completed using generic descriptive thematic analysis. Five key themes were identified: (1) factors negatively impacting patient health, (2) use of technology, (3) care provider emotions, (4) care provider education and advocacy, and (5) outreach team factors. Identified barriers during the pandemic included worsening of existing patient vulnerabilities, as well as challenges incorporating technology into care. Providers faced increased emotional burden, with a rise in workload, stress, fear, and grief. However, several facilitators allowed teams to provide high-quality care to this vulnerable population, including team support, interprofessional collaboration, and advocacy and education initiatives. The outreach model also proved to be a highly flexible, resilient, and adaptable model for providing care during the COVID-19 pandemic.

Improved Communication Skills Assisting Cancer Patients Through Counseling Training Palliative Volunteers in Surabaya

Introduction: The prevalence of tumors/cancer in Indonesia is increasing. Many cases of cancer at an advanced stage experience severe symptoms and cause suffering that has not been handled properly. Palliative care helps a cancer survivor and his or her family to live a more comfortable life to have a better quality of life. Methods: For this reason, a team that works in an integrated manner includes both medical and non-medical personnel, including volunteers. The role of volunteers in palliative care teams varies according to need and can be involved in hospital care, or at home, expected to bridge between health care institutions and patients. Psychiatrists at Dr. Soetomo General Hospital Surabaya and their residents try to give four sessions of volunteer training to raise awareness, provide health education, or even provide some simple type of medical care and work as counselors. Results: After giving four training sessions every week, the ability of palliative teams had increased. They have the capability to communicate more effectively and efficiently, which is therapeutic, so it is necessary to provide them with counseling skills to listen to, understand, and respond positively when communicating with cancer patients and their families.

Physio- und Ergotherapie in der deutschen Palliativmedizin – wo stehen wir?

IntroductionPhysical therapy (PT) and occupational therapy (OT) as supportive forms of treatment in palliative care, together with other treatment measures, can create participation for seriously ill patients in the form of a life that is as autonomous as possible until the end of life. However, specially trained staff are needed for the care of palliative patients in order to do justice to the clients’ special life situation. In Germany, no corresponding survey on the subject has so far been conducted. So it is unclear to what extent PT and OT are offered in palliative care structures in this country, which tasks are assigned to the respective professional groups, and what the level of knowledge is that caregivers have about treatment options. AimCompilation of an overview of the provision, need and use of PT and OT in the various areas of palliative care in Germany. If there is a lack of provision, the reasons for this will be identified. MethodsIn this cross-sectional survey, a self-designed 9-item questionnaire was sent out to a total of 260 hospices, 323 palliative care units and 304 specialized outpatient palliative care services (SOPC) listed on the homepage of the German Society for Palliative Medicine (DGP). The respondents’ answers were analysed using a purely descriptive approach. ResultsThe response rate was 439 (49.5%). A total of 434 questionnaires (49%) were included in the analysis. A heterogeneous distribution of PT and OT offers between outpatient, inpatient, and hospice palliative care can be seen, with the outpatient area showing a significantly fewer offerings. 29% of the SOPC teams can offer neither PT nor OT. This is mostly due to a shortage of skilled workers or a lack of funding opportunities. The different areas of responsibility of physiotherapists and occupational therapists are known to the majority of respondents (hospice 87%, palliative care unit 83%, SOPC 81%) and are also reflected in the distribution of tasks between the two professional groups. Especially palliative care units and SOPC teams state that they would like to offer more PT and OT (palliative care units 42% more PT and 58% more OT; SOPC 65% more PT and 50% more OT). DiscussionThis cross-sectional survey is the first of its kind to provide an overview of the PT and OT offerings in the different sectors of German palliative care. In a comparison of the two forms of therapy, occupational therapists are used less frequently than physiotherapists. An international comparison of the study situation also shows that the use of OT in palliative care, in particular, has not yet been implemented satisfactorily. Outside Germany, the main reasons for this are a shortage of specialists and a lack of knowledge about the tasks of OT. ConclusionPT and OT are frequently used treatment options in all areas of German palliative care. In order to better classify structural problems in care, further differentiated surveys should be conducted. Furthermore, a better knowledge base should be created through research and information activities of both professional groups in palliative care.

Assessing the Feasibility and Implementation of Palliative Care Triggers in a Surgical Intensive Care Unit to Improve Interdisciplinary Collaboration for Patient and Family Care.

Although palliative care focuses on supporting patients and families through serious illness, it is underutilized in the surgical intensive care unit (SICU). In 2020, patients in the SICU represented only 2.75% of our palliative team's consults. We hypothesize that utilization of palliative care triggers in the SICU will increase collaboration between SICU and palliative care teams and improve patient/family experiences. After reviewing our team's consultation records and the published literature, a consult trigger program was implemented for patients with a SICU length of stay >10 days, unplanned SICU readmission, or new diagnosis of metastatic cancer. A pre-intervention survey assessed SICU providers' perceptions of palliative care. Retrospective analysis evaluated qualitative and quantitative measures. 97% of SICU providers felt increased palliative care would be helpful. During the 6-month project, January 1, 2021 - June 30, 2021, our palliative team performed 27 triggered consults, representing 3.3% of the total 818 consults performed during this period and thus a 20% increase in SICU palliative consults. Triggered consults represented many primary surgical services and the most common consult reason was length-of-stay. All consults included discussions about goals of care and 16 of the 27 patients/families expressed restorative goals. Numerous notes documented family appreciation.

The practice of palliative care clinical nurse specialists in the care of cancer patients in the State of Qatar

Background and objective: There is an annual increase in the number of metastatic advanced cancer patients who require palliative care; this is paralleled by the necessary increase in the workload of palliative care Clinical Nurse Specialist (CNS). Palliative care CNSs are crucial members in the palliative care multidisciplinary team. The aim of this paper is to describe the role of clinical nurse specialists by clarifying the ambiguity of their responsibilities in advanced cancer patients' care in the state of Qatar.Methods: Data used in this descriptive study were extracted from a shared Excel data registry system that has been created by palliative care CNSs. Data were retrieved from the 1st of January 2021 till the 31st of December 2021 and translated into numbers and percentages. Results: A total of 3,571 patients' encounters were captured starting from the 1st of January 2021 till the 31st of December 2021. National Center for Cancer Care and Research (NCCCR) inpatient's encounters (33%), followed by telephone consultations (32%) were the highest two approaches to palliative care services delivered by CNSs. Pain and non-pain symptoms management, early introduction to palliative care, patient and family education and support, end-of-life care, and coordination of care with other health care professionals are few examples of the other services offered by palliative care CNSs for cancer patients at Hamad Medical Corporation (HMC).Conclusions: Palliative care CNSs’ roles are multidimensional and highly needed. Some of their clinical activities are unnoticed, especially due to the high number of patients’ encounters and the different geographic locations at HMC that CNSs cover. Future research is highly needed to describe the role of palliative care CNSs in areas, such as research, education, and leadership.

P09.07.A Signs and Symptoms in the last days of life of the glioblastoma patients - A Descriptive and Retrospective Study

Abstract Background Despite scientific advances to develop techniques for early diagnosis and treatment of glioblastoma, the disease continues to have a remarkably poor prognosis. Studies have shown that in patients with glioblastoma, not only the presence of end-of-life signs and symptoms but also their frequency differs from those in the rest of cancer patients. The complexity of glioblastoma symptoms makes the integration of a palliative care philosophy essential. Objective To identify the main signs and symptoms that occur in patients with glioblastoma in their last seven days of life in a neuro-oncology ward. Material and Methods This was a descriptive and retrospective study regarding the signs and symptoms in the last seven days of life of patients with glioblastoma who were admitted to the neurology ward of a national oncology reference center. The patients were admitted after neuro-oncologist consultations between 2019 and 2020. The data collection instrument used was based on the document “The Last Hours of Living”. Confidentiality of the participants was guaranteed, and authorization was obtained from the institution’s ethics committee. Results The sample had 17 patients (13 men and 4 women), with an average hospital stay of 17.3 days. The men and women had average ages of 61.8 and 63 years, respectively. Clinical and nursing records revealed that the most prevalent signs and symptoms were “decreased level of consciousness” (94%); “rare and unexpected events” (94%); “respiratory dysfunction” (88%); and “loss of ability to swallow” (76%). In the last seven days of life, the approximate times of presentation for these signs and symptoms were: decreased level of consciousness, 6 days; rare and unexpected events, 2 days; respiratory dysfunction, 3 days; and loss of ability to swallow, 6 days. Support was requested from the in-hospital palliative care support team for 76.4% of patients. Conclusion The identification of reduced level of consciousness and alterations in swallowing as the most prevalent symptoms is consistent with the findings of previous studies. The prevalence of rare and unexpected events (such as fever, myoclonus and seizures) aligns with previous studies that indicated a difference in the signs and symptoms presented by patients with glioblastoma in the last days of life and patients with other oncological diseases. In this sense, the instrument used for data collection may not be the most appropriate for the population with primary central nervous system tumors. The decreased level of consciousness and impaired communication can complicate the assessment of signs and symptoms, such as pain, nausea, anxiety and depression. It is essential to conduct research studies with more representative samples. The recording of the signs and symptoms presented, as well as interventions and the evaluation of their effectiveness, are essential to ensure the quality of end-of-life.

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial.

Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it has not been used widely. This study is aimed at determining the benefits of integrated HBPC for the quality of life (QoL) and symptoms intensity in Indonesian children with malignancies. A randomized controlled trial was carried out to compare the quality of life between patients who were given PC (a three-month home visit) and those who did not receive PC (control group). Each group was constituted of thirty children with cancer and aged 2-18 years old and were consulted by a palliative team. The participants were randomly allocated to two groups. In the first and twelfth weeks of the intervention, all patients were assessed using the Pediatric Quality of Life Inventory (PedsQLTM) questionnaire cancer module 3.0 (report by proxy or self-report). Symptoms intensity (pain, anorexia, sleep disturbance) were scored by using Edmonton Symptoms Assessment Scale (ESAS). The mean score and each dimension score of both groups were compared and analyzed using bivariate analysis. In total, fifty participants were included in the study. A significant difference was found between the two groups in terms of the mean total score in control group 62.39 and intervention group 81.63 (p<0.001). The QoL was improved in the intervention group, while it was declined in the control group as the disease progressed. The main improvements were in the pain and nausea aspects (p<0.001), followed by procedural anxiety (p=0.002), treatment anxiety (p=0.002), and worry (p=0.014). Palliative intervention significantly reduced sleep disturbances (p=0.003) and anorexia (p<0.001). Home-based PC improved several aspects of QoL and caused better symptom management in children with malignancies. An early intervention concurrent with the underlying treatment can improve QoL in these children.

Providing End-of-Life Care in the Community: What Are the Challenges in Malaysia?

A 72-year-old woman with metastatic lung cancer to bone and brain and with left external iliac vein thrombosis was under the care of a community palliative care provider. She experienced an acute pain crisis due to acute limb ischemia of the left lower limb. Goals-of-care discussions were held with the patient and her family; she prioritized symptom control and end-of-life care at home. The family and patient were aware of her short prognosis. Her complex pain was managed by the community palliative team, and her family was empowered to give subcutaneous injections. We illustrate a case showing the importance of community health services with palliative care support in providing symptom management and support to patient and family caregivers throughout the course of a life-limiting illness. It also highlights family caregivers' potential psychological distress in delivering subcutaneous injections in terminal care for a patient at home.

A systematic review of interventional studies on oral care of palliative patients

To study and review the effectiveness of oral care interventions for palliative patients for amelioration of clinical conditions affecting oral cavity. Following PRISMA standard, a systematic evaluation of articles published between 2000 and 2021 was undertaken utilising five databases on interventions studies. This comprehensive review consists of randomised controlled trials (RCTs) and specific types of non-randomised studies (NRS) examining oral care interventions for palliative patients. Three independent authors screened search records, identified related studies, extracted data and evaluated risk of bias. The key findings of each study were summarised according to the research questions and data that generated during the data extraction procedure. Out of the 67 identified studies, seven were included in this review (five RCTs and two NRSs) involving head-and-neck cancer, oral cancer, oral mucositis, xerostomia and individuals with malignant disease. Interventions studied were: Ziziphus honey, artificial saliva, CAM2028-Benzydamine, morphine mouthwash, ketamine mouthwash, bethanechol tablets and caphosol with regular oral-care. The durations of interventions in the included studies were largely short-term (six weeks or less). Overall, six studies revealed good results in support of the intervention, with magnitudes of effect ranging from 13.2-10,110.0%. However, just four researches found significant changes, with magnitudes of effect ranging from 50.0-10,110.0%. Although two of the trials have not revealed significant changes in the results, investigations have indicated a reduction in oral conditions in the group with interventions. Only one trial has not indicated an improvement in oral conditions in the groups which received the interventions. By assessing the efficacy of available oral hygiene interventions for palliative patients, this systematic review can help palliative team finds the viable strategies to apply in controlling oral problems among hospice patients. Even though only four of the seven research found a statistically significant difference, most studies found great effectiveness in favour of intervention.