Does It Matter Whether a Psychiatric Intervention Is "Palliative"?

Palliative interventions are intended to alleviate suffering and improve quality, not quantity, of life and are not intended to cure illness. In psychiatry, uncertainty about which interventions count as palliative stems from the fact that psychiatry generally prioritizes symptom management irrespective of diagnosis or specific pathophysiology of illness. This commentary on a case considers how distinctions between palliative and other psychiatric interventions might not be all that helpful in resolving clinical and ethical questions about which interventions are-and when they are-appropriate.

What Should Clinicians Know About Palliative Psychopharmacology?

The nature and scope of palliative psychiatry and associated ethical implications are debated in the literature. This article examines conceptual limitations of extant accounts of palliative psychiatry, with a focus on psychopharmacological practice, and suggests that modifiable and unmodifiable psychiatric illnesses exist on a spectrum along which broader or narrower palliative psychiatric care approaches can be outlined. The article also discusses how these approaches intersect with questions about whether and to what extent psychiatric medications have symptom-reducing or disease-modifying effects. The discussion leads to the conclusion that clinicians are ethically obliged to distinguish among and clearly formulate goals of care in a dynamic and ongoing process of shared decision making with patients.

How Palliation Can Improve Care of Patients With Severe and Enduring Anorexia Nervosa.

Palliative care refers to clinical interventions whose purpose is relief of suffering, not treatment of a patient's underlying illness. Palliation is widely used in the care of patients with serious physical illnesses, but its use in caring for patients with severe, persistent mental illnesses is controversial. This commentary on a case summarizes emerging themes in palliative psychiatry and explores its ethical feasibility in the care of patients with severe and enduring anorexia nervosa.

Is There a Case for Palliative Care Addiction Psychiatry?

This commentary on a case suggests how palliative care psychiatry can facilitate compassionate resolution of ethical conflicts in end-of-life care decision making with persons with substance use disorders.

How Should Long-Term Psychotherapy Address Ethical Questions During the Palliative Care of a Patient With Serious and Persistent Mental Illness?

This commentary on a case considers the course of a palliative approach to care of a patient with a serious and persistent mental illness. Supposing a psychiatrist and patient mutually agree that the patient's chronic refractory illness should be palliatively managed with long-term psychotherapy, the next step is to forecast possible ethical questions that can arise during the course of such care and to share decision making about how to respond to those questions.

A Life-Affirming Palliative Care Model for Severe and Enduring Anorexia Nervosa.

Some individuals with severe and enduring anorexia nervosa experience dramatically degraded quality of life in the face of refractory illness and compulsory treatment. We propose a palliative care (PC) model for this group of patients that aims to support their unique goals of care, improve social-professional function, reduce physical suffering, and honor the whole person. Far from representing a pre-hospice model, a PC model for those with severe and enduring anorexia nervosa instead provides an alternative to current practices in hopes of meaningfully improving quality of life and outcomes.

Distinct Dysphagia Profiles in Patients With Oral Cancer After Surgery.

OBJECTIVES: To determine distinct profiles based on symptom severity in patients undergoing surgery for oral cancer and examine whether these profiles differ by participant characteristics. SAMPLE & SETTING: 300 patients who underwent surgery for oral cancer at two outpatient clinics between June and December 2021. METHODS & VARIABLES: Symptoms were assessed using the MD Anderson Symptom Inventory-Head and Neck Cancer Module. Sociodemographic and clinical characteristics were collected. Latent profile analysis was performed. RESULTS: Five distinct dysphagia profiles were identified, which qualitatively differed regarding co-occurrence patterns of dysphagia, mucus-related symptoms, speech disturbances, and psychoneurologic symptoms. Significant differences were reported in interference to function, number of co-occurring symptoms, time since diagnosis and treatment completion, use of symptom management medications, oral cancer stage and site, and treatment completed. IMPLICATIONS FOR NURSING: Identifying distinct dysphagia profiles can improve patient outcomes and help in planning specific nursing interventions to influence nutritional and functional status in oral cancer survivors. Dysphagia and dry mouth can persist beyond one year post-treatment, so follow-up dysphagia assessments are needed.

Symptom Experiences Among Individuals With Prostate Cancer and Their Partners: Influence of Sociodemographic and Cancer Characteristics.

OBJECTIVES: To determine if subgroups of individuals with prostate cancer and their partners could be identified based on their distinct symptom profiles and to identify and characterize subgroups based on sociodemographic and cancer characteristics. SAMPLE & SETTING: 263 individuals with prostate cancer and 263 partners recruited from three academic cancer centers in the Midwest. METHODS & VARIABLES: Latent class analysis was applied to divide individuals into subgroups based on symptom prevalence. Multinomial logistic regression models were used to estimate the prevalence of each symptom, predict subgroup membership, and adjust for direct or indirect effects of covariates on the symptoms. RESULTS: Three distinct subgroups (low, moderate, and high symptoms) were identified among individuals with prostate cancer and partners, respectively. Education and household income of individuals with prostate cancer were associated with different symptom burdens. Partners' household income differentiated among the subgroups. IMPLICATIONS FOR NURSING: Understanding the influence of sociodemographic and cancer characteristics can inform risk stratification and tailored symptom management interventions.

HIDDEN2: Study protocol for the hospital deep vein thrombosis detection study in patients with cancer receiving palliative care.

INTRODUCTION: Medical patients, admitted acutely to hospital, are at risk of venous thromboembolism (VTE). Clinical guidelines advise thromboprophylaxis prophylaxis for those at high risk of VTE. VTE is a common sequela of cancer, but guidelines take little consideration of cancer as an independent risk factor and their utility in palliative care patients is unclear. The hospice inpatient deep vein thrombosis (DVT) detection study (HIDDen) reported a 28% prevalence of asymptomatic iliofemoral DVT in hospice patients of poor performance status (PS) and prognosis, calling into question the utility of thromboprophylaxis in the palliative care setting. However, the majority of cancer inpatients receiving palliative care are admitted to hospital through the acute medical setting, yet their risk factors for VTE may differ from those admitted to hospices. OBJECTIVE: To better understand the prevalence and behaviours of VTE in patients with cancer receiving palliative care who are admitted as an acute medical emergency. DESIGN: Multicentre, observational cohort study. SETTING: Secondary care acute hospitals in South Wales, UK. PATIENTS: We plan to recruit 232 patients≥18 years old with a diagnosis of incurable cancer, and/or receiving palliative or best supportive care who are admitted acutely to hospital. Patients will be followed up for a maximum of 6 months following registration. PRIMARY OUTCOME: Presence of lower extremity DVT. SECONDARY OUTCOMES: Symptom burden attributed to DVT or pulmonary embolism, patient PS, patient demographics and development of new VTE within 90 days of registration. ANALYSIS: The study statistical analysis plan will document analysis, methodology and procedures. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Wales Research Ethics Committee, reference 22/WA/0037 (IRAS 306352)-the main trial results will be analysed as soon as practically possible and the publication shared with investigators and on sponsor website; applications to access trial data will be subject to sponsor review process.

Participatory development of a manual for the implementation of diversity-sensitive palliative and hospice care in Germany: a mixed-methods study protocol.

BACKGROUND: The diversity of the population is associated with different needs and expectations towards palliative and hospice care. Current approaches available in Germany generally fall short in addressing the role of diversity and intersectionality in this health care setting and healthcare facilities struggle with organizational difficulties and missing information on how to implement corresponding diversity-sensitive measures. The present study aims to develop a hands-on manual that enables providers of hospice and palliative care to implement measures and strategies for diversity-sensitive care, while taking into account the perspective of healthcare users and explicitly including vulnerable and minority patient groups. METHODS: A participatory approach is used to co-create the aforementioned manual using an explanatory sequential mixed-methods design. First, based on a systematic analysis of existing measures, an initial draft of the manual will be developed. Subsequently, an online survey will be conducted among all hospice and palliative care providers in Germany (n = 2,823). Based on the results of the survey, 12 to 15 qualitative problem-centered interviews will be conducted with employees of selected providers who took part in the survey. Results of the survey and the qualitative interviews will be integrated and analyzed. In parallel to the development and research process, a comprehensive dissemination strategy will be developed. DISCUSSION: The manual will assist providers of palliative and hospice care in determining goals, needs, and available resources in order to utilize patient-centered and diversity-sensitive measures to meet a wide range of expectations. It can also be informative for providers in other countries. The participatory co-development approach ensures the practical relevance of the manual, while the mixed-methods design allows for targeted input on the manual's usability, acceptance, and viability as a supportive tool.

Healthcare professionals' perspectives of the management of people with palliative care needs in the emergency department of a UK hospital.

BACKGROUND: The Emergency Department (ED) is not always the optimal place for people with palliative care needs but is the most common route for treatment when urgent care is sought. The aim of this study,''REasons for PalLIative Care Admissions (REPLICA)' was to explore the perspectives of ED healthcare professionals of hospital admission or discharge via ED for palliative care patients. METHODS: This is a sequential mixed methods study comprising (i) quantitative descriptive analysis of Hospital Episode Statistics (HES) of palliative care patients (code Z51.5) who were admitted through ED in a West Midlands Hospital and for the rest of England; (ii) in-depth semi-structured interviews with 17 ED staff which were analysed using thematic content analysis. RESULTS: Over the four years (2013-2017), 430,116 people admitted through ED were identified with a Z51.5 diagnosis code, 0.6% (n = 2736) of whom were from the West Midlands Hospital. The most common reasons for palliative care patients' admission to hospitals across England were for care of chronic kidney disease, cancers and urinary tract infections. Five themes were elicited from the qualitative analysis: (1) Providing palliative care in ED is challenging, due to factors including lack of training in palliative care and the unsuitable environment. (2) Patients go to ED due to challenges in community management such as inappropriate referrals and no care plan in place. (3) Health system influences admission and discharge decisions, including bed availability and being unable to set up community services out-of-hours. (4) Discussion with patient about treatment and end of life care needs to be outside of ED whilst the patient is still well enough to express their wishes. (5) Improving services for patients with palliative care needs. Recommendations include short training sessions for ED staff and accessing palliative care professionals 24/7. CONCLUSIONS: A large number of palliative care patients visit ED and are admitted to hospital for care; there is an urgent need to prevent patients attending the hospital through the establishment of a coordinated and dedicated service to support palliative care patients in the community.

[Corneal donation and anticipatory care in palliative care]. / Don de cornées et abord anticipé du patient en soins palliatifs.

Until now, the early approach of palliative care patients for corneal harvesting has been unheard of in France. At the Centre Hospitalier Intercommunal de Villeneuve-Saint-Georges Lucie-et-Raymond-Aubrac, in the Val-de-Marne region of France, we offer a rigorous and respectful procedure and organization for patients who have been carefully selected for an early approach to donation.

Slum compassionate community: expanding access to palliative care in Brazil.

OBJECTIVE: To describe the implementation of a compassionate community in Rocinha and Vidigal slums, located in the city of Rio de Janeiro. METHOD: Report on the experience of implementing a Compassionate Community based on the World Health Organization conceptual bases, supported by university extension guidelines. RESULTS: Initially, local leaders and residents were recruited and trained in palliative care. Subsequently, health professionals from different specialties engaged in the project through volunteering. Home visits were instituted in the form of interconsultation and "sponsorships" by residents and health professionals to people in palliative care and family members. Finally, the health care network in the territory was integrated in order to recognize the project as a support network. CONCLUSION: We highlight the experience as living work in health, which involves relationships and creative processes, which mobilize structured technical knowledge and relationships between people and soft-hard and soft technologies, making it possible to recognize powers in the territory.

Comparison of home-based palliative care delivered by community health workers versus usual care: research protocol for a pilot randomized controlled trial.

BACKGROUND: Research studies demonstrate that palliative care can improve patient outcomes such as quality of life, symptom burden and patient satisfaction with care (Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):CD00776) (World Health Organization. Palliative Care. Published 2020.). While 76% of patients who need palliative care live in limited-resource countries, access to high quality palliative services in these countries is minimal (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care (2nd ed). 2020.). In 2014 the Worldwide Hospice Palliative Care Alliance, with strong endorsement by the WHO, released the Palliative Care Toolkit to provide a training and implementation toolkit for empowering community members to deliver palliative care in resource poor settings (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland 2014.). They encouraged researchers and public health practitioners to conduct rigorous evaluation of the toolkit in diverse settings and contexts. To address this need, we will conduct a pilot randomized controlled trial (RCT) to examine implementation and explore potential effect of an intervention based upon the Palliative Care Toolkit, as adapted and used by community health workers (CHWs) working with a cancer center in Kolkata, India to deliver home-based palliative care for rural patients. METHODS: Utilizing a randomized controlled trial design, intervention patients (n = 45) receive home-based palliative services (Pal-Care) delivered by community health workers (CHWs), with comparison against a control group of patients (n = 45) who receive usual cancer-center-based palliative services. Primary outcome measures include evaluation of CHW training outcomes, roles and responsibilities of the CHWS and how they assist patients, trial recruitment, stakeholder perceptions of the intervention, and fidelity to study protocol. Secondary outcomes measure patient self-report of health-related quality of life, symptom burden, palliative needs and patient care experience, outcomes The RE-AIM framework guides our evaluation plan to measure the reach, effectiveness, adoption, implementation and maintenance of the Pal-Care intervention (Gaglio B, et al. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013;103(6):e38?46.). Data will be analyzed in SAS. All measures will be evaluated overall and by patient age, gender and cancer type and by CHW caseload. DISCUSSION: Pal-Care is a RCT funded by the NCI to explore utilization of CHWs to deliver a home-based palliative care intervention built upon the WHO Palliative Care toolkit (PCT), as compared to a usual care control group. The long-term goal of this research is to develop an effective and sustainable model for delivering home-based palliative care for cancer patients in underserved areas. TRIAL REGISTRATION (TRN): ClinicalTrials.gov ID# NCT04972630.

Preferences and end of life care for residents of aged care facilities: a mixed methods study.

BACKGROUND: Residential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities. METHODS: We collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents' wishes. RESULTS: Most residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference). CONCLUSION(S): To better provide care in accordance with a person's wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents' preferences.

Filling gaps in experiences religious understanding of people living with cancer in palliative care: a phenomenological qualitative study.

BACKGROUND: According to a phenomenology of contemporary religion, the analysis of religious experiences finds that they are part of an individual's search for something powerful that overcomes him seeking not only a need, but the meaning of all existence. The present study aims to contribute to a deeper understanding of the religious experiences of people living with cancer in palliative care (PC) and fill gaps in access to experience, with regard to how it was properly lived. METHODS: A qualitative, phenomenological, cross-sectional study was conducted with 14 people living with cancer undergoing PC at two outpatient clinics of a public hospital. The experiences were accessed through in-depth interviews and the results were analysed according to the principles of classical phenomenology. RESULTS: The patients confidently surrendered to the divine, attributing to it the power of continuity of life or not, which sustained them and launched them into horizons of hope, directing them to possibilities of achieving meaning in life, which it fed back their faith and to continue living, opening them up to an intense perception of the value of life. CONCLUSIONS: The religious positions of confident surrender to the divine, to his will and a belief in his intervention, regardless of the outcome, opened possibilities to patients for the belief in the continuity of life by the power of faith. This position allowed the patients in this study to visualize achievements in the present and in the future, opening a horizon of hope, meaning and value of living. This study showed how this elements are presented and sustained, providing subsidies to health professionals seeking to provide more holistic care.

Expert-approved best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care (SedPall).

BACKGROUND: The use of sedative drugs and intentional sedation in end-of-life care is associated with clinical, ethical and legal challenges. In view of these and of the issue's great importance to patients undergoing intolerable suffering, we conducted a project titled SedPall ("From anxiolysis to deep continuous sedation - Development of recommendations for sedation in palliative care") with the purpose of developing best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care and obtaining feedback and approval from experts in this area. DESIGN: Our stepwise approach entailed drafting the recommendations, obtaining expert feedback, conducting a single-round Delphi study, and convening a consensus conference. As an interdisciplinary group, we created a set of best practice recommendations based on previously published guidance and empirical and normative analysis, and drawing on feedback from experts, including patient representatives and of public involvement participants. We set the required agreement rate for approval at the single-round Delphi and the consensus conference at ≥80%. RESULTS: Ten experts commented on the recommendations' first draft. The Delphi panel comprised 50 experts and patient and public involvement participants, while 46 participants attended the consensus conference. In total, the participants in these stages of the process approved 66 recommendations, covering the topics "indications", "intent/purpose [of sedation]", "decision-making", "information and consent", "medication and type of sedation", "monitoring", "management of fluids and nutrition", "continuing other measures", "support for relatives", and "team support". The recommendations include suggestions on terminology and comments on legal issues. CONCLUSION: Further research will be required for evaluating the feasibility of the recommendations' implementation and their effectiveness. The recommendations and the suggested terminology may serve as a resource for healthcare professionals in Germany on the use of sedative drugs and intentional sedation in specialist palliative care and may contribute to discussion on the topic at an international level. TRIAL REGISTRATION: DRKS00015047 (German Clinical Trials Register).

Digital Innovations (Isan Cohort).

Innovations in digital procedures are discussed and highlighted in this chapter providing a comprehensive background and an overview of the Cholangiocarcinoma Screening and Care Program (CASCAP), and the innovative data base known as the Isan cohort, including the O. viverrini - CCA module, tele-radiology, databases for pathology, surgery, palliative care, and a randomized controlled trial database.