Consideraciones bioéticas en el manejo de la esclerosis lateral amiotrófica: Una aproximación al quehacer fonoaudiológico

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.

Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

Addressing the Unmet Needs of Patients With Rapidly Progressive Neurological Disease: A Case Report of Palliative Care in Creutzfeldt-Jakob Disease (CJD).

Creutzfeldt-Jacob disease (CJD) is a rare neurodegenerative disorder that typically progresses rapidly and unrelentingly. Providing comfort and support for patients with CJD presents significant challenges for clinicians and caregivers. In comparison to the more typical disease progression experienced in dementias, the trajectory of CJD differs significantly. This case report delves into these differences and emphasizes the need for the development of guidelines for healthcare professionals and families who care for individuals with CJD. Such guidelines would help facilitate better care and support for patients and their families throughout the course of this devastating illness.

Pediatric End-of-Life Simulation Workshop to Clinical Care: Lasting Implications on Clinical Practice.

Background: Simulations are an important modality for practicing high-acuity, low-frequency events. We implemented a deliberate practice simulation-based workshop to improve pediatric end-of-life care skills (PECS) competence. Purpose: To understand pediatric subspecialty fellows' perceptions about influences of a simulation-based workshop on PECS provided at the bedside several months following participation. Methods: Pediatric subspecialty fellows were recruited to voluntary focus groups during regular educational sessions six months following PECS workshop participation with aims to identify perceptions about their workshop participation and any implication on their clinical practice. Inductive qualitative content analysis of focus group interview data was performed adhering to the Standards for Reporting Qualitative Research. Results: Ten fellows participated in one of three focus groups. Researchers identified three major themes of fellow experience: burden, safe practice space, and self-efficacy. Fellows described practice implications from workshop participation, including incorporation of specific practices, improved anticipatory guidance, and increased team leader confidence. Conclusions: Targeted, deliberate simulation-based practice of PECS can help close the gap from learning to practice, contributing to provider self-efficacy and potentially improving clinical care for pediatric patients and families at end of life.

Adaptation of the Serious Illness Conversation Guide to Singapore's Multicultural Setting for Patients With Heart Failure, Renal Failure, or Cancer.

Background: The Serious Illness Conversation Guide (SICG) was developed by Ariadne Labs in the United States. However, there is a scarcity of literature on the cross-cultural adaptations of the SICG in Asian settings. Objectives: We aimed to adapt the SICG for English-speaking patients with serious illnesses in Singapore. Methods: We purposively recruited 28 patients with advanced stages of heart failure, renal failure, or cancer from a tertiary hospital. A designated research team member conducted semistructured interviews to obtain participants' feedback on the SICG. The interviews were transcribed by the designated study team member. Participants' response to each item on the SICG was coded quantitatively into categories to denote participant acceptance, partial acceptance, or nonacceptance. Transcripts were further analyzed using content analysis to understand participants' rationale regarding feedback of the specific SICG item. Modifications to the SICG were iteratively made over time to obtain its current version. Results: Participants indicated a preference for direct language with shorter sentences and inclusive pronouns. It was considered important that clinicians keep the conversation hopeful, individualize the conversation content according to the patient's journey, and use prompts where necessary to support the patient's elaboration. Conclusion: This study outlined a patient-centric approach to localizing the SICG in the English language to a new cultural context, marking the first such effort in an Asian setting. Further study is under way to evaluate the SICG in more disease populations and non-English languages used in Singapore.

Use of Dexamethasone for Severe Fatigue in the Advanced Cancer Population: A Brief Report.

Background: Fatigue is a common and distressing symptom for palliative care patients. Although the current literature emphasizes nonpharmacological management, dexamethasone is reportedly used in clinical practice. This study helps to characterize its use, efficacy, and adverse effects in a real-world setting. Objective: To improve the evidence base by exploring the use, efficacy, and side effect profile of dexamethasone for fatigue management. Methods: This international multisite prospective observational case series assessed the benefit and adverse effects of dexamethasone at baseline (T0) and at five to seven days postbaseline (T1). Fatigue scores were assessed using the symptom assessment scale (SAS) and visual analogue fatigue scale (VAFS). Adverse events were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events (NCI-CTCAE). The related samples Wilcoxon signed-rank test was used to compare before and after scores. Results: All 18 patients (male-female, 11:7) had advanced metastatic cancer with most in the deteriorating palliative care phase (56%). The most common dose of dexamethasone was 4 mg daily orally. At T1 (n = 12), improvement was seen in all measures of fatigue; the median SAS scores decreased from 7 to 5.5 (p = 0.007), the median VAFS scores increased from 3 to 5 (p = 0.126), and the median NCI-CTCAE fatigue scores were reduced from 3 to 2.5 (p = 0.18). Dexamethasone was well tolerated; one participant experienced grade 3 delirium. Conclusion: The small number of participants recruited for this study suggests that dexamethasone is not widely used specifically for fatigue. Our results suggest an improvement in fatigue scores from T0 to T1.

Death rattle: palliative nursing practices Delphi study.

OBJECTIVES: Interventions for patients with death rattle remain under consideration, and their families strongly acknowledge the need for improved care. However, few reports exist concerning specific and comprehensive nursing practices for them. This study aimed to clarify nursing practices for patients with death rattle and their families in hospital wards and examine each practice's importance. METHODS: We used a modified Delphi method with expert nurses with extensive experience in end-of-life care. Participants were recruited using convenience and snowball sampling. First, we developed a list of nursing practices through a literature review and individual interviews. Second, we conducted the Delphi survey. Two rounds of judging were performed. Items were rated on a 9-point Likert scale (1=not important at all to 9=very important). An item was considered 'important' if at least 80% of the participants rated it ≥7. RESULTS: The list comprised 40 items across 8 domains: assessment of death rattle and the distress felt by the patients, oral care, repositioning, adjustment of parenteral hydration, suctioning, administration of alleviating medications, communication with and assessment of family members who witness death rattle, and nurse's attitude towards death rattle and the relevant interventions. Of the 46 recruited experts, 42 participated in both rounds. Participants regarded 37 of the 40 items as important. CONCLUSIONS: This study specifically and comprehensively identified nursing practices for patients with death rattle and their families using a modified Delphi method to support clinical nursing practice and improve the quality of care.

Effects of palliative intrathecal analgesia on patients with refractory cancer bone pain.

This study examined the effects of intrathecal analgesia (ITA) using an extracorporeal pump with a subcutaneous port system in cancer patients with bone metastasis. Among the patients who died of cancer with bone metastasis at the palliative care unit of our institution, 11 who received ITA were selected. Changes in pain, opioid doses, the palliative prognostic index (PPI), and Eastern Cooperative Oncology Group Performance Scale　after ITA were assessed. Pain, opioid doses, and PPI decreased after ITA (P = 0.002, 0.002, and 0.017). ITA for cancer patients with increased PPI due to refractory cancer bone pain decreased pain, opioid doses, and PPI.(100 words).

"To prescribe or not to prescribe, that is the question": Perspectives on opioid prescribing for chronic, cancer-related pain from clinicians who treat pain in survivorship.

BACKGROUND: Opioid pain management in cancer survivorship is a complex and understudied topic. METHODS: The authors conducted in-depth, qualitative interviews to understand clinician approaches to opioid pain management in chronic cancer pain and to generate ideas for improvement. They used a rigorous, inductive, qualitative, descriptive approach to examine clinician (n = 20) perspectives about opioid pain management in survivorship, including oncologists (n = 5), palliative care clinicians (n = 8), primary care clinicians (n = 5), and pain management specialists (n = 2). RESULTS: The findings indicated that no consistent medical home exists for chronic pain management in cancer survivors and that there are fundamental differences in how each subspecialty approaches chronic pain management in survivorship (e.g., "Do we think of this as noncancer pain or cancer pain?… This is in this limbo zone-this gray zone-because it's cancer-related pain, right?"). Simultaneously, clinicians are influenced by their peers' perceptions of their opioid prescribing decisions, sparking intraprofessional tension when disagreement occurs. In these instances, clinicians described overthinking and doubting their clinical decision-making as well as a sense of judgment, pressure, and/or shame. Finally, clinicians acknowledged a fear of consequences for opioid prescribing decisions. Specifically, participants cited conflict with patients, sometimes escalating to aggression and threats of violence, as well as potential disciplinary actions and/or legal consequences. CONCLUSIONS: Participants suggested that opportunities to improve chronic cancer pain care include developing clear, systematic guidance for chronic cancer pain management, facilitating clinician communication and consultation, creating tailored survivorship care plans in partnership with patients, and developing accessible, evidence-based, complementary pain treatments.

The Value of Screening for a History of Incarceration in the Palliative Care Setting.

The United States (US) has one of the highest rates of incarceration in the world. Due to the aging of the US population as a whole and limited opportunities for early release, the proportion of older people in prison continues to rise. Some correctional health systems have adopted geriatric and palliative care principles to better care for this aging population, many of whom die in prison. However, not everyone who grows old in prison will die behind bars. In this article, we explore existing literature that highlights the unique physical, cognitive, and psychosocial challenges that formerly incarcerated patients face. We proceed to argue that palliative care providers should screen for a history of incarceration to identify and address the needs of this patient population. We also offer strategies to create a safe, welcoming environment to discuss past traumas related to these patients' time in prison.

Initial Experiences With Integration of Palliative Medicine and Specialist Pain Services in a Tertiary Cancer Care Center in India.

Pain management constitutes a pivotal aspect of palliative care. Certain instances of distressing pain are significantly relieved through interventional pain methodologies, demanding the expertise of pain specialists. Our perspective revolves around the integration of these 2 facets, envisaging a symbiotic relationship that could enhance patient outcomes. A prospective assessment was carried out within a collaborative clinic, uniting the realms of pain management and palliative medicine. Anonymized patient information was scrutinized to grasp the advantages of this amalgamation and identify strategies to address any inherent deficiencies. Furthermore, an illustrative case study was delineated, spotlighting the collaborative dynamics at a systemic level. During the period spanning from November 2020 to June 2021, a total of 43 patients received consultations at this collaborative clinic. Each patient was exposed to a comprehensive pain management regimen, with the most frequently conducted procedure being an intercostal nerve block, which was administered in 9.30% of cases. For the provision of effective pain relief within the palliative care context, the confluence of joint consultations from cancer pain specialists emerges as a requisite measure. This approach carries the promise of optimizing pain control and augmenting the quality of palliative care.

Core Competencies for Serious Illness Conversations: An Integrative Systematic Review.

Objective: The Serious Illness Care Program was developed to support goals and values discussions between seriously ill patients and their clinicians. The core competencies, that is, the essential clinical conversation skills that are described as requisite for effective serious illness conversations (SICs) in practice, have not yet been explicated. This integrative systematic review aimed to identify core competencies for SICs in the context of the Serious Illness Care Program. Methods: Articles published between January 2014 and March 2023 were identified in MEDLINE, PsycINFO, CINAHL, and PubMed databases. In total, 313 records underwent title and abstract screening, and 96 full-text articles were assessed for eligibility. The articles were critically appraised using the Joanna Briggs Institute Critical Appraisal Guidelines, and data were analyzed using thematic synthesis. Results: In total, 53 articles were included. Clinicians' core competencies for SICs were described in 3 themes: conversation resources, intrapersonal capabilities, and interpersonal capabilities. Conversation resources included using the conversation guide as a tool, together with applying appropriate communication skills to support better communication. Intrapersonal capabilities included calibrating one's own attitudes and mindset as well as confidence and self-assurance to engage in SICs. Interpersonal capabilities focused on the clinician's ability to interact with patients and family members to foster a mutually trusting relationship, including empathetic communication with attention and adherence to patient and family members views, goals, needs, and preferences. Conclusions: Clinicians need to efficiently combine conversation resources with intrapersonal and interpersonal skills to successfully conduct and interact in SICs.

Early Incorporation to Palliative Care (EPC) in Patients With Advanced Non-Small Cell Lung Cancer: The PACO Randomized Clinical Trial.

BACKGROUND: Patients with non-small cell lung cancer (NSCLC) experience a considerable disease burden, evident in symptomatic and psychological spheres. Advanced cancer represents a complex scenario for patients and the healthcare team. Early palliative care (EPC) has been proven as a clinically meaningful strategy in this context by several randomized trials but not in a resource-limited setting. This study aimed to evaluate the effect of EPC compared with standard oncological care (SOC) in patients with metastatic NSCLC in Mexico. MATERIALS AND METHODS: A prospective, randomized clinical trial was conducted at Instituto Nacional de Cancerologia in Mexico. All patients had histologically confirmed metastatic NSCLC without previous treatment. Patients were randomly assigned (1:1) to receive SOC or SOC + EPC. The EPC group was introduced to the palliative care team at baseline after randomization, which was integrated by psychologists, bachelor's in nutrition, specialized nurses, and physicians. Patients randomized to this arm had programmed visits to meet with the team at baseline and through the 2nd, 4th-, and 6th cycles thereafter. The primary endpoint was overall survival (OS); secondary outcomes included quality of life (QoL), anxiety and depression, and symptom intensity. They were assessed using the instruments EORTC QLQ-C30 questionnaire, Edmonton Symptom Assessment Scale (ESAS), and the Hospital Anxiety and Depression Scale (HADS) (clinicaltrials.gov [NCT01631565]). Questionnaires were completed at baseline, at 2nd, 4th, and 6th cycles of treatment. RESULTS: Between March 2012 and June 2015, 201 patients were assessed for eligibility and 146 were enrolled and allocated to receive EPC (73) or SOC (73). Median OS for patients in the EPC vs SOC arm was 18.1 months (95% CI, 7.9-28.4) and 10.5 months (95% CI, 4.7-16.2) (P = .029). Having a poor performance status (HR 1.7 [1.2-2.5]; P = .004) and allocation to the control group (HR 1.5 [1.03-2.3]; P = .034) were independently associated with a worse OS. Those patients with a global QoL > 70 at baseline had a better OS if they were In the EPC arm (38.7 months (95% CI, 9.9-67.6) vs SOC 21.4 months (95% CI, 12.4-30.3)). Mean QoL had a numerical improvement in patients allocated to EPC after 6 cycles of follow-up, nonetheless this difference was not statistically significant (55.1 ±â€…23.7 vs 56.9 ±â€…25.3; P = .753). There were no significant differences in anxiety and depression at all study points. CONCLUSIONS: EPC is associated with a significant improvement in OS, although, we observed that the greatest benefit of providing EPC was observed in those with a global QoL > 70 at baseline. This study did not identify significant changes in terms of QoL or symptom burden between the study groups after follow-up. Evidence robustly suggests that EPC should be considered part of the multidisciplinary treatment of metastatic NSCLC patients since diagnosis. According to our study, EPC can be implemented in low- or middle-income countries (LMIC).

Implementation and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT™) in acute care.

OBJECTIVES: The Supportive and Palliative Care Indicators Tool (SPICT™) has been used to identify patients at risk of deteriorating and dying within 1 year. Early identification and integration of advance care planning (ACP) provides the opportunity for a better quality of life for patients. The aims of this study were to identify the number of patients who were SPICT™ positive; their mortality rates at 6 and 12 months of the SPICT™ assessment; and level of adherence to ACP documentation. METHODS: A retrospective audit of the Supportive and Palliative Care database was conducted at an acute aged care precinct in a major metropolitan tertiary referral hospital in New South Wales, Australia. Data comprising demographics, clinical conditions, SPICT™ positivity and compliance with ACP documentation were collected. SPICT™-positive patients and mortality were tracked at 6 and 12 months, respectively. RESULTS: Data from 153 patients were collected. The mean age of the patients was 84.1 (±7.8) years, and the length of hospital stay was 10 (±24.7) (range 1-269) days. Approximately 37% were from residential care, and 80% had family deciding on their care. About 15% died during hospitalisation, and 48% were discharged to a care facility. The ACP documentation showed various levels of completion. Mortality rates at 6 and 12 months were 36% and 39%, respectively. Most patients (99%) were SPICT™-positive, with indicators correlating with higher mortality rates at both follow-ups. CONCLUSIONS: The study emphasises the critical need for addressing ACP and palliative care among older patients with life-limiting conditions. It underscores the importance of timely discussions, documentation, and cessation of futile interventions.

Tongue edema as an adverse drug reaction to low-dose olanzapine in a cancer patient receiving palliative care.

OBJECTIVES: Olanzapine is an atypical neuroleptic indicated for treatment of various psychiatric disorders, but it has also several indications in palliative care (PC) patients: opioids misuse, nausea not related to chemotherapy, anorexia-cachexia syndrome, and sleep and mood disorders. Peripheral and facial edema are a rare side effect of the treatment with olanzapine. I report a case of an advanced cancer patient cared receiving PC who developed moderate tongue edema on day 1 of a low dose of olanzapine. METHODS: A patient with advance and metastatic colon cancer presented moderate tongue edema on day 1 of a low dose (2.5 mg) of olanzapine for the treatment of his nausea, anorexia-cachexia syndrome, and mood disorder (mainly anxiety). RESULTS: The patient discontinued the drug with resolution of the edema. The day after he called our outpatients' service, a prompt physical examination, together with blood tests, excluded other differential diagnosis. SIGNIFICANCE OF RESULTS: To the best of our knowledge, this is the second case reporting head and neck localized edema due to olanzapine treatment in a patient with advanced cancer receiving PC. Considering the increasing use of olanzapine as off-label treatment in these patients (often for cluster symptoms), our report could help clinicians in daily practice and researchers on put a deeper focus on indications for olanzapine in PC.

A Process Evaluation of a Palliative Care Social Work Intervention for Cancer Patients in Skilled Nursing Facilities.

Background: Assessing and Listening to Individual Goals and Needs (ALIGN) is a palliative care social work intervention that aims to improve delivery of goal-concordant care for hospitalized older adults with cancer discharged to skilled nursing facilities. Objective: Explore processes through which ALIGN may improve delivery of goal-concordant care to substantiate the conceptual model grounding the intervention and to inform mechanistic hypotheses of how the intervention might be effective. Design: A process evaluation triangulating findings from patient and caregiver interviews with a matrix analysis of ALIGN social worker notes. Setting/Participants: Patients (n = 6) and caregivers (n = 13) who participated in a single-arm pilot study of ALIGN in the United States and 113 intervention notes (n = 18 patients) written by 2 ALIGN social workers. Measurement: Qualitative thematic content analysis Results: Themes included the following: (1) ALIGN helped reconcile participants' misaligned expectations of rehabilitation with the reality of the patient's progressive illness; (2) ALIGN helped participants manage uncertainty and stress about forthcoming medical decision making; (3) the longitudinal nature of ALIGN allowed for iterative value-based goals of care discussions during a time when patients were changing their focus of treatment; and (4) ALIGN activated participants to advocate for their needs. Conclusions: ALIGN offers support in prognostic understanding, communication, and decision making during a pivotal time when patient and caregivers' goals have not been met and they are reassessing priorities. A larger trial is needed to understand how these processes may improve the ability of participants to make value-based decisions and aide in delivery of goal-concordant care. Clinical Trial Registration Number: NCT04882111.

Neuropsychiatric Effects Associated with Opioid-Based Management for Palliative Care Patients.

PURPOSE OF REVIEW: The abundance of opioids administered in the palliative care setting that was once considered a standard of care is at present necessitating that providers evaluate patients for unintentional and deleterious symptomology related to aberrant opioid use and addiction. Polypharmacy with opioids is dynamic in affecting patients neurologically, and increased amounts of prescriptions have had inimical effects, not only for the individual, but also for their families and healthcare providers. The purpose of this review is to widen the perspective of opioid consequences and bring awareness to the numerous neuropsychiatric effects associated with the most commonly prescribed opioids for patients receiving palliative care. RECENT FINDINGS: Numerous clinical and research studies have found evidence in support for increased incidence of opioid usage and abuse as well as undesirable neurological outcomes. The most common and concerning effects of opioid usage in this setting are delirium and problematic drug-related behavioral changes such as deceitful behavior towards family and physicians, anger outbursts, overtaking of medications, and early prescription refill requests. Other neuropsychiatric effects detailed by recent studies include drug-seeking behavior, tolerance, dependence, addictive disorder, anxiety, substance use disorder, emotional distress, continuation of opioids to avoid opioid withdrawal syndrome, depression, and suicidal ideation. Opioid usage has detrimental and confounding effects that have been overlooked for many years by palliative care providers and patients receiving palliative care. It is necessary, even lifesaving, to be cognizant of potential neuropsychiatric effects that opioids can have on an individual, especially for those under palliative care. By having an increased understanding and awareness of potential opioid neuropsychiatric effects, patient quality of life can be improved, healthcare system costs can be decreased, and patient outcomes can be met and exceeded.

Disease-State Understanding and Experience of Patients Receiving Continuous Intravenous Inotropic Support as Palliative Therapy: A Multicenter Survey.

Background: The use of continuous intravenous inotropic support (CIIS) as palliative therapy in patients with advanced heart failure (HF) has increased over the past decade. CIIS improves New York Heart Association (NYHA) functional class but does not impact survival. Objective: The objective of this study was to examine patients' understanding of the therapeutic intent of CIIS, prognostic awareness, and quality of life with CIIS. Design: We conducted a prospective, cross-sectional, multicenter study of patients with advanced HF receiving CIIS as palliative therapy between 2020 and 2022. Settings/Subjects: An investigator-developed survey instrument was administered to outpatients on CIIS in the United States via telephone. Measurements: Survey data were analyzed using descriptive and inferential statistics. Results: Forty-eight patients, 63% male, 81% African American/Black, with a mean age of 68.9 (standard deviation 12.3) years, participated in this study. The majority of patients responded that they expected CIIS to make them feel better (79%) and increase longevity (75%), but few expected that CIIS would cure their HF (19%). Patients described their overall quality of life on CIIS as not better/worse (19%), somewhat better (46%), and significantly better (35%) and reported high treatment satisfaction (87% were at least somewhat satisfied). Conclusions: In this study, patients report improved quality of life with CIIS as palliative therapy. Patients on CIIS as palliative therapy expected increased survival on CIIS, which is incongruent with current evidence. Further studies on how we can improve care processes so that patients have accurate prognostic and disease-state awareness, and receive goal concordant care, are warranted.

Providing holistic end-of-life care for people with a history of problem substance use: a mixed methods cohort study of interdisciplinary service provision and integrated care.

Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve.

Identifying cancer patients who received palliative care using the SPICT-LIS in medical records: a rule-based algorithm and text-mining technique.

BACKGROUND: Due to limited numbers of palliative care specialists and/or resources, accessing palliative care remains limited in many low and middle-income countries. Data science methods, such as rule-based algorithms and text mining, have potential to improve palliative care by facilitating analysis of electronic healthcare records. This study aimed to develop and evaluate a rule-based algorithm for identifying cancer patients who may benefit from palliative care based on the Thai version of the Supportive and Palliative Care Indicators for a Low-Income Setting (SPICT-LIS) criteria. METHODS: The medical records of 14,363 cancer patients aged 18 years and older, diagnosed between 2016 and 2020 at Songklanagarind Hospital, were analyzed. Two rule-based algorithms, strict and relaxed, were designed to identify key SPICT-LIS indicators in the electronic medical records using tokenization and sentiment analysis. The inter-rater reliability between these two algorithms and palliative care physicians was assessed using percentage agreement and Cohen's kappa coefficient. Additionally, factors associated with patients might be given palliative care as they will benefit from it were examined. RESULTS: The strict rule-based algorithm demonstrated a high degree of accuracy, with 95% agreement and Cohen's kappa coefficient of 0.83. In contrast, the relaxed rule-based algorithm demonstrated a lower agreement (71% agreement and Cohen's kappa of 0.16). Advanced-stage cancer with symptoms such as pain, dyspnea, edema, delirium, xerostomia, and anorexia were identified as significant predictors of potentially benefiting from palliative care. CONCLUSION: The integration of rule-based algorithms with electronic medical records offers a promising method for enhancing the timely and accurate identification of patients with cancer might benefit from palliative care.