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Journal of Palliative Medicine Aug 2023Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has...
Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions. Retrospective cohort study using data from the electronic health record. Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021. Patients' medical, surgical, and admission-level characteristics were abstracted. Associations were evaluated between these characteristics and the occurrence and timing of a palliative care consult relative to surgery and death. Of 134 patients, 84% received a palliative care consult during their terminal admission. Approximately 36% of consults occurred before surgery, and 12% were within one day of death. Children without a palliative care consult were more likely than children with a consult to die during surgery (19.1% vs. 2.7%, = 0.02), have surgery within 24 hours of death (52.4% vs. 15.9%, < 0.001), and undergo a full resuscitation attempt (47.6% vs. 12.4%, = 0.002). Receipt of a palliative care consultation did not differ by patient sex, reported race and ethnicity, language, insurance, or income level. Palliative care consults support high-quality end-of-life care for children and impact perioperative outcomes, including intensity of surgical care and resuscitation in the final hours of life.
Topics: Humans; Child; United States; Palliative Care; Retrospective Studies; Terminal Care; Hospice Care; Referral and Consultation
PubMed: 36827088
DOI: 10.1089/jpm.2022.0610 -
BMC Palliative Care Mar 2024Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of...
BACKGROUND
Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care.
METHODS
A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values.
RESULTS
We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values.
CONCLUSION
Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.
Topics: Humans; Child; Palliative Care; Quality of Life; Terminal Care; Pain; Family
PubMed: 38481215
DOI: 10.1186/s12904-024-01367-w -
Palliative & Supportive Care Jun 2024Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care...
OBJECTIVES
Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called "informal caregivers." The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed.
METHODS
An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals.
RESULTS
Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness.
SIGNIFICANCE OF RESULTS
This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between "roles." It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one's illness, given how important it is to address the family's needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people's needs.
Topics: Humans; Caregivers; Male; Female; Health Personnel; Portugal; Palliative Care; Qualitative Research; Middle Aged; Adult; Aged; Social Support; Neoplasms; Attitude of Health Personnel
PubMed: 38178271
DOI: 10.1017/S1478951523001864 -
American Society of Clinical Oncology... Jun 2024Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including... (Review)
Review
Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including improved quality of life, reduced physical and psychological symptom burden, enhanced prognostic awareness, and reduced health care utilization at the end of life. Although ASCO and others recommend early palliative care for all patients with advanced cancer, widespread implementation of early palliative care has not been realized because of barriers such as insufficient reimbursement and a palliative care workforce shortage. Investigators have recently tested several implementation strategies to overcome these barriers, including triggers for palliative care consultations, telehealth delivery, navigator-delivered interventions, and primary palliative care interventions. More research is needed to identify mechanisms to distribute palliative care optimally and equitably. Simultaneously, the transformation of the oncology treatment landscape has led to shifts in the supportive care needs of patients and caregivers, who may experience longer, uncertain trajectories of cancer. Now, palliative care also plays a clear role in the care of patients with hematologic malignancies and may be beneficial for patients undergoing phase I clinical trials and their caregivers. Further research and clinical guidance regarding how to balance the risks and benefits of opioid therapy and safely manage cancer-related pain across this wide range of settings are urgently needed. The strengths of early palliative care in supporting patients' and caregivers' coping and centering decisions on their goals and values remain valuable in the care of patients receiving cutting-edge personalized cancer care.
Topics: Humans; Palliative Care; Neoplasms; Precision Medicine; Quality of Life
PubMed: 38815187
DOI: 10.1200/EDBK_100038 -
BMC Palliative Care Dec 2023Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support... (Review)
Review
BACKGROUND
Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence.
METHODS
The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence.
RESULTS
The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence.
CONCLUSIONS
The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
Topics: Child; Humans; Advance Care Planning; Decision Making, Shared; Palliative Care; Parents; Practice Guidelines as Topic
PubMed: 38041060
DOI: 10.1186/s12904-023-01293-3 -
Pneumologie (Stuttgart, Germany) May 2024Palliative medicine is an essential part in the treatment of patients with advanced or metastatic NSCLC. A structured palliative approach beginning from diagnoses... (Review)
Review
Palliative medicine is an essential part in the treatment of patients with advanced or metastatic NSCLC. A structured palliative approach beginning from diagnoses improves quality of life and maybe even prolong survival. Besides symptom control, the disease trajectory and prognosis should regularly be re-evaluated and discussed with the patient and his loved ones.
Topics: Palliative Care; Humans; Lung Neoplasms; Carcinoma, Non-Small-Cell Lung; Quality of Life
PubMed: 38081220
DOI: 10.1055/a-2206-5602 -
Palliative care interventions for patients with head and neck cancer: protocol for a scoping review.BMJ Open Nov 2023A head and neck cancer (HNC) diagnosis significantly impacts a patient's quality of life (QOL). Palliative care potentially improves their QOL. We will conduct a scoping...
INTRODUCTION
A head and neck cancer (HNC) diagnosis significantly impacts a patient's quality of life (QOL). Palliative care potentially improves their QOL. We will conduct a scoping review to identify existing knowledge about palliative care interventions for patients with HNC.
METHODS AND ANALYSIS
This scoping review was designed in accordance with the JBI Manual for Evidence Synthesis: Scoping Reviews and will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. Our eligibility criteria follow the Population, Intervention, Comparison or Control, Outcomes and Study characteristics framework. The population is adult patients with locally advanced, metastatic, unresectable and/or recurrent HNC. We include peer-reviewed journal articles and articles in the press, in English, reporting on palliative care interventions with at least two of the eight National Consensus Project on Clinical Practice Guidelines for Quality Palliative Care domains; studies with and without comparators will be included. The outcomes are patient QOL (primary) and symptom severity, patients' satisfaction with care, patients' mood, advance care planning and place of death (secondary). We developed a search strategy across ten databases, to be searched from the inception to 11 September 2023: Medline ALL (Medline and EPub Ahead of Print and In-Process, In-Data-Review & Other Non-Indexed Citations), Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Embase Classic+Embase, Emcare and PsycINFO all from the OvidSP platform; CINAHL from EBSCOhost, Scopus from Elsevier, Web of Science from Clarivate and Global Index Medicus from WHO. We will extract data using a piloted data form and analyse the data through descriptive statistics and thematic analysis.
ETHICS AND DISSEMINATION
Ethics approval is not needed for a scoping review. We will disseminate the findings to healthcare providers and policy-makers by publishing the results in a scientific journal.
Topics: Adult; Humans; Palliative Care; Quality of Life; Neoplasm Recurrence, Local; Head and Neck Neoplasms; Health Personnel; Research Design; Systematic Reviews as Topic; Review Literature as Topic
PubMed: 38011979
DOI: 10.1136/bmjopen-2023-078980 -
A Systematic Approach to Assessing and Addressing Palliative Care Needs in an Outpatient Population.Journal of Pain and Symptom Management Sep 2023A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations.
CONTEXT/OBJECTIVES
A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations.
METHODS
An automated screen identified Medicare primary care patients who had serious illness based on diagnosis codes and utilization patterns. A stepped-wedge design was used to evaluate a six-month intervention through which a healthcare navigator assessed these seriously ill patients and their care partners for PC needs in the domains of 1) physical symptoms, 2) emotional distress, 3) practical concerns, and 4) advance care planning (ACP) via telephone surveys. Identified needs were addressed with tailored PC interventions.
RESULTS
A total of 292/2175 (13.4%) patients screened positive for serious illness. A total of 145 completed an intervention phase; 83 completed a control phase. Severe physical symptoms were identified in 27.6%, emotional distress in 57.2%, practical concerns in 37.2%, and ACP needs in 56.6%. Twenty-five intervention patients (17.2%) were referred to specialty PC compared to six control patients (7.2%). Prevalence of ACP notes increased 45.5%-71.7% (p = 0.001) during the intervention and remained stable during the control phase. Quality of life remained stable during the intervention and declined 7.4/10-6.5/10 (P =0.04) during the control phase.
CONCLUSION
Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life.
Topics: Aged; Humans; United States; Palliative Care; Quality of Life; Outpatients; Medicare; Hospice and Palliative Care Nursing; Advance Care Planning
PubMed: 37380147
DOI: 10.1016/j.jpainsymman.2023.06.024 -
Annals of Palliative Medicine Mar 2024The indication "existential suffering (ES)" for palliative sedation therapy is included in most frameworks for palliative sedation and has been controversially discussed... (Review)
Review
BACKGROUND AND OBJECTIVE
The indication "existential suffering (ES)" for palliative sedation therapy is included in most frameworks for palliative sedation and has been controversially discussed for decades. The appellative character of ES demands rapid relief and sedation often appears to be the best or only solution. ES is still poorly understood and so often neglected by health care professionals due to a lack of consensus regarding assessment, definition and treatment in the international medical literature. Based on a selective review of the literature on ES we propose a different view on the underlying processes of ES and the resulting consequences on medical treatment.
METHODS
A narrative review was performed after PubMed search using key terms related to ES and sedation, covering the period from 1950 to April 2023, additionally a selective search in specialist literature on Existential Analysis. Reverse and forward snowballing followed. The language of analyzed publications was restricted to English and German.
KEY CONTENT AND FINDINGS
ES is a multidimensional experience that tends to turn into despair and ultimately into a wish to die due to perceived hopelessness and meaninglessness. Pharmacological treatment or sedation do not meet the holistic needs of existential sufferers. The risk of harmful effects by continuous deep sedation seems to be significantly increased for existentially suffering patients. Professional caregivers are burdened by the appellative character of ES, limited treatment options and perceived empathic distress. Without a holistic understanding of the human condition in palliative care, ES cannot be fundamentally alleviated, and existential sufferers have no opportunity to transform and thus mitigate their condition. The recognition of underlying causes of suffering-moods is facilitated by the comprehensive approach of Existential Analysis.
CONCLUSIONS
The presented concept of Existential Analysis and the triad of ES are useful instruments for health care professionals to recognize and support underlying moods of existentially suffering patients. Further studies are required. Comprehensive training for professional caregivers on ES is essential to enable them to reflect on their own existential concerns and finiteness as well as those of patients. Continuous deep sedation for ES must remain the exception, equivalent to a last resort option.
Topics: Humans; Terminal Care; Stress, Psychological; Hypnotics and Sedatives; Palliative Care; Existentialism
PubMed: 38462938
DOI: 10.21037/apm-23-474 -
The American Journal of Hospice &... Sep 2023Explore the existing literature on the experience and needs of palliative nurses facing job burnout. (Review)
Review
AIM
Explore the existing literature on the experience and needs of palliative nurses facing job burnout.
BACKGROUND
On a global scale, with the increase of aging, the number of people in need of palliative care has increased significantly, which has a huge impact on the professional pressure of palliative nurses. Existing literature focuses on examining palliative care from the perspective of patients, but palliative nurses also face the threats to physical and mental health caused by job burnout.
EVALUATION
A systematic literature search has been carried out in the following databases as of October 2021:PubMed, EMBASE, CINAHL, Web of Science, and Scopus. The Cochrane Library and Joanna Briggs Institute Library were also searched to confirm if there are any available systematic reviews on the subject. Manually searched the reference list of included papers.
KEY ISSUES
Seventeen studies were included in this review. Five key issues in the palliative care nurse's experience: (1) psychological harm, (2) physical symptoms, (3) negative emotions, (4) Burnout caused by communication barriers, and (5) Lack of experience. Two key issues in the needs of palliative care nurses: (1) social support, and (2) training and education.
CONCLUSION
The pressure of facing death for a long time and controlling the symptoms of patients has a very important impact on the mental and physical health of palliative nurses. Nursing staff have needed to be satisfied, and it is essential to provide support and help relieve the pressure on palliative nurses.
Topics: Humans; Hospice Care; Palliative Care; Burnout, Professional; Nursing Staff; Nurses
PubMed: 36400563
DOI: 10.1177/10499091221141063