Palliative Patients Research Articles

Parkinson disease patients' and carepartners’ perceptions of palliative care

IntroductionOutpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. MethodsUsing qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. ResultsFive themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients’ emotional needs and for carepartners, and for anticipatory guidance to guide future planning. ConclusionsDespite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.

It Takes a Village: Coordinating and Streamlining Access to Palliative Care Resources through a Centralized Referral and Contact

Introduction/Background: The Couchiching Ontario Health Team (COHT) is a first-round health team in rural Ontario, Canada, designed as part the Provincial Government’s new model of health care delivery that puts patients, families and caregivers at the center of the health care system. The COHT members include Family Health Teams, primary care physicians, home care support services, an acute care hospital, Indigenous healing providers, community housing support services, a fulsome Patient and Family Advisory Council and many others. As part of the year-one priority population strategy, improving resource allocation and multi-provider care delivery for Palliative Patients was identified as of utmost importance. 
 The COHT Palliative Care Network identified multiple doors of resource access, multiple referrals and a variety of disparate services available, but not formally connected, for one of the most vulnerable populations. We heard from patients, families and caregivers that they were confused about who to contact first, specifically those without a Primary Care Provider, and would often turn to acute care services as a result.
 Engagement – Shared Values and Vision: The Palliative Care Network Working Group brought together a fulsome compliment of multi-sectoral, interdisciplinary team members, on a monthly basis, to work towards a common goal; ensuring one-door access to all palliative care services within the Couchiching area.
 After a gap analysis identified not only gaps in the system, but also instances where work was being duplicated (from a lack of shared care plans and standardized communication), the group started to focus on identifying the needs for the palliative population, and their caregivers to access a fulsome resource complement, geared to every stage of their care journey, by ensuring no door would be the wrong door.
 This led to the creation of One-number and One-referral accessed by Primary Care, Nurse Practitioners, Nurses and even community members themselves, for the purpose of accessing and navigating necessary services. By completing one referral form and answering a few simple questions a patient or their caregiver can be directed to Nursing Services for symptom relief or end of life goals, Hospice to inquire about a bed, Social Work for grief and bereavement services, volunteer or faith groups and even connected with Primary Care.
 System Wide Governance and Leadership: By assigning governance through shared accountability agreements, to a multi-organizational OHT, each group member feels responsible for the outcomes of the population as a whole, providing a team-based approach to care delivery. While still working within the constraints of traditional funding principles, organizations are dividing up work, and creatively finding ways to ensure care is provided to patients in their preferred setting, which is often their own home. With human health resource scarcity, and burnout at the forefront of healthcare, the centralized referral’s ability to triage patients with the greatest needs, and share that responsibility with other Working Group members has been incredibly impactful and has allowed for the navigation, and coordination of integrated services to be seamlessly delivered by a varied group of providers to offer wraparound care for the most vulnerable population.

"Palliare" surrounded with care.

Introduction: Despite scientific evidence about the benefits of Advance Care Planning (ACP) for patients with non-curative treatment, ACP is rarely discussed in practice. Why is it difficult for health professionals to mention ACP? How can patients and their family caregivers take control of their own care process and be actively engaged?
 The aim of this project is to empower patients and their family caregivers to discuss their wishes and care goals in a palliative phase, and to provide health professionals with communication techniques and skills to use in a palliative conversation. A common language is introduced so that all parties can communicate more comfortably with each other.
 Target groups: We focus on oncology patients with non-curative therapy, their relatives and their professional care providers.
 To identify these palliative patients, physicians will have to indicate via MOC (multidisciplinary oncologic consultation) registration if the therapy of an oncology patient is curative or non-curative. If the patient can’t be cured, early palliative care needs to be integrated into daily oncology practice by offering an interactive meeting in group. The group of care providers is a multidisciplinary team with oncologists, oncology nurses, palliative care specialists, bedside nurses, social workers, psychologists, etc.
 Methodology: We started with a kick-off session in which the members of the project (oncologists, oncology nurse, palliative care specialist and palliative care nurse) explained the purpose of the project to healthcare professionals. We explained a number of concepts and suggested the specific language we want to maintain.
 After this first session, we organized interactive workshops for patients and their relatives to provide them with tools to establish and communicate about their end of life wishes and care goals. In this workshop, we explained the concept of ‘palliative care’ and the importance of an active involvement of the patient and his/ her relatives during this palliative phase. By performing a role play, we elaborated on the questions that are important to ask the physician, and how patients and relatives can ask these questions.
 In parallel we organized workshops for different teams of health professionals to provide them with more advanced communication skills and to learn them how to sense when patients are ready for a palliative care conversation. In these interactive workshops we also interspersed communication theory with role plays.
 Results: Surveys based on the validated PAM-13 questionnaire will be provided to all participants (patients and healthcare professionals). Because the project is still in full development at the moment, we don’t have results yet. We hope to present our results during the ICIC23 in May 2023 and to enthuse and inspire other healthcare professionals about the importance of patient empowerment during a palliative phase.

GERONTOLOGICAL ASPECTS AND PALLIATIVE CARE IN FAMILY MEDICINE

This article presents a literature analysis on the gerontological aspects of comorbidity and the provision of palliative care in the practice of a family doctor. According to the UN, in 2020, the age of almost every tenth inhabitant of the Earth exceeded 65 years. In 2050, their share will increase from 9.3% to 15.9%. The share of people aged 60 and over will make up to one third of the global population. Analysis of referrals to outpatient polyclinic institutions shows that, in general, for all classes of diseases and individual diseases, the highest percentage of referrals to a doctor is observed in groups of 70 years and older. In old age, both physiological and pathological aging are accompanied by structural and functional changes of all organs and systems, hemodynamic disturbances, deterioration of blood supply to tissues, increased risk of hypoxia with early activation of anaerobic mechanisms. Among those who seek medical help from a family doctor in Ukraine, the share of elderly patients with combined pathology is more than 80%. Elderly people with comorbid conditions experience pain more frequently than those in other age groups. One of the primary medical, social and humanitarian problems of many countries throughout the world is the creation and development of an accessible and effective system of providing palliative care to the population. These problems arose due to an increase in the number of incurable patients with a limited life expectancy. Based on the analysis of the experience of different countries, it is convincingly clear that palliative and hospice care best provides the needs and proper quality of life of palliative patients and their relatives, contributes to the preservation of human dignity at the end of biological life. The goal of palliative care is to alleviate the suffering of patients and their families by comprehensively assessing and treating the physical, psychosocial, and spiritual symptoms experienced by patients. Palliative care focuses on predicting, preventing, diagnosing, and treating the symptoms experienced by patients with serious or life-threatening illness, and on helping patients and their families make important medical decisions. A family doctor is recognized as a specialist in the medical field who can most fully influence the health of the population. Family doctors provide palliative care, they consult, educate relatives and friends of the patient about the patient's needs, provide psychological and moral support to both the patient and his family.

Consensus document on palliative care in cardiorenal patients.

There is an unmet need to create consensus documents on the management of cardiorenal patients since, due to the aging of the population and the rise of both pathologies, these patients are becoming more prevalent in daily clinical practice. Chronic kidney disease coexists in up to 40%-50% of patients with chronic heart failure cases. There have yet to be consensus documents on how to approach palliative care in cardiorenal patients. There are guidelines for patients with heart failure and chronic kidney disease separately, but they do not specifically address patients with concomitant heart failure and kidney disease. For this reason, our document includes experts from different specialties, who will not only address the justification of palliative care in cardiorenal patients but also how to identify this patient profile, the shared planning of their care, as well as knowledge of their trajectory and the palliative patient management both in the drugs that will help us control symptoms and in advanced measures. Dialysis and its different types will also be addressed, as palliative measures and when the decision to continue or not perform them could be considered. Finally, the psychosocial approach and adapted pharmacotherapy will be discussed.

Anxiety and depression in palliative care cancer patients in Vietnam: baseline data from a randomized controlled trial of multidisciplinary palliative care versus standard care

Anxiety and depression in palliative care cancer patients in Vietnam: baseline data from a randomized controlled trial of multidisciplinary palliative care versus standard care

Decision making in emergency laparotomy: updated results of an international multi disciplinary judgement analysis study

Abstract Aims The aim of our study is to assess how professionals take decisions when evaluating suitability of patients for emergency laparotomy or palliation. Methods We created and validated a dataset of 90 case vignettes based on real patients admitted with surgical pathology correctable only via an emergency laparotomy. We removed information concerning real life outcomes. We submitted the vignettes to consultants and trainees in surgery, anaesthesia and intensive care, asking them if they would offer an emergency laparotomy. Concordance between assessors and real life decisions, accuracy scores (the lower the value the higher the likelihood of operating on patients that survived) and inconsistency scores were calculated. Judgement Analysis methodology (binomial logistic regression) was used to identify variables relevant to the decision making process for each participant. Results This report includes results for the first 110 participants. Thirteen centres provided data (4 from Italy, 8 from the UK, 1 from Greece). 54 consultants, 39 registrars, 13 core trainees participated. 68 were surgeons, 26 anaesthetists and 9 intensivists. Median concordance between decision makers and real life was 78.9%. Median accuracy was 17 (IQR 11-34.3). Median inconsistency was 13% (IQR 7%-20%). Concordance, accuracy and consistency strongly correlated with each other and were better for consultants and worse for trainees. Judgment Analysis demonstrated differences between grades, specialities and institutions. Conclusions Different clinicians, when faced with the same information, make different decisions. Our updated data supports the adoption of multidisciplinary decision making protocols as well as senior involvement.

P132: Efficacy of Vortioxetine in Major Depression in Terminal Cancer. About a Case

Introduction:Major depression is one of the most widely recognized psychiatric disorders in cancer patients. In Spain,16.49% of cancer patients develop a Major Depressive Disorder. It arises as a reaction to a traumatic experience influenced by events and environmental conditions and develops as a consequence, of an adverse event, whether single or recurring. When depressive symptoms interfere with the proper functioning of cancer patients, antidepressants are the first line of treatment. We refer to Vortioxetine as the antidepressant of choice.Medical History:We present a 68-year-old patient diagnosed with Prostate Neoplasm (Gleason Grade 6 STAGE IV Adenocarcinoma) with Bone and Pulmonary Metastasis, who was referred, to the PADES Service of CSS Bernat Jaume, for poor pain control at the L5-L7 lumbar spine level. (VAS 9/10), immobility and depression after his prognostic information and short-term expectations.We want to assess the usefulness of Vortioxetine for depression in cancer terminal patients. The diagnostic criteria for depressive disorder were evaluated according to the DSM-V(6) risk factors for depression in palliative patients. The Visual Analogue Scale for the evaluation of the pain (0 no pain and 10, unbearable pain). Previously used medications for pain control, and depression were assessed. It was decided to start treatment with Vortioxetine and assess the response.Treatment:We started Vortioxetine 5 mg for a week and appetite improved, as well as VAS 5/10. After fifteen days, he was able to walk, and his insomnia and anxiety decreased. He remained stable with the prescribed medication until, due to complications secondary to his oncological pathology, he was admitted to The Palliative Care Unit to begin sedation.Conclusions:In terminal cancer patients with depression, it would be advisable to use Vortioxetine to improve their quality of life in situation of last days.

The use of electronic Patient Reported Outcomes in follow-up after palliative radiotherapy: A survey study in Belgium

ObjectiveElectronic Patient-Reported Outcome Measures (ePROMs) could be used to monitor patients' symptoms after treatment. However, ePROM implementation in clinical practice has been challenging, especially in (palliative) radiation oncology. The aim of this study was to explore the opinions of healthcare providers (HCP) active in radiation oncology in Belgium on the use of ePROMs for symptom follow-up after palliative radiotherapy. MethodsAn anonymous online survey was conducted with different HCP in radiation oncology in Belgium. Participants were recruited through several professional organizations with approximately 390 members actively working in the field of radiation oncology. The survey used was a self-developed questionnaire, based on existing literature on implementation of (e)PROMs in cancer care, our previous research on this topic as well as our personal experience in the field of oncology and palliative care. ResultsOf the 128 respondents, 26% had experience with ePROMs in clinical practice. Eighty-four percent considered ePROMs beneficial for patients' health and symptom knowledge, symptom self-management and active participation in care. ePROMs could help HCP to focus on detection of relevant symptoms and improve their management. Almost 75% were willing to implement and use ePROMs. Assigning ePROM introduction and follow-up to a dedicated person, such as a nurse navigator, was suggested to promote ePROM implementation and use in clinical practice. ConclusionDespite limited experience with ePROMs in clinical care for palliative radiotherapy patients, the majority of respondents is willing to implement and use ePROMs for this particular patient population. InnovationThis is one of the first studies specifically focusing on experiences and opinions of HCP in radiation oncology on the use of ePROMs for symptom follow-up in palliative radiotherapy. HCP should be actively involved in implementation of ePROMs after palliative radiotherapy, to translate their vision of their ideals in practice.

A model of intended and ideal prescribing and medication use in symptom control in palliative care: an international scoping review

Abstract Introduction UK health policy documents are committed to improving personalised palliative care for people of all ages, prioritising access to coordinated care and health inequity. The UK Health and Care Act 2022 has stated it is a statutory requirement for Integrated Care Boards to commission palliative and end of life care services. Palliative care focuses on improving the quality of life of patients and families who are facing problems associated with life-limiting illness, and often involves medication for symptom control. Medication has been reported in 19% of NHS serious incident reports involving palliative patients, mostly occurring in patient homes, with half when specialists did not provide care.1 Aim To document a model of existing evidence illustrating intended processes when palliative medications are prescribed for symptom control and used by adults at home, in hospital and hospice settings. Methods We performed a scoping review using JBI methodology.2 Population (P): (i) adults in the last phase of life, (ii) informal carers supporting an adult as described above, (iii) healthcare professionals providing palliative care for symptom control. Concept (C): multistep processes for medication use for symptom control in palliative care. Context (C): care settings where palliative care may be anticipated, planned or happen. A systematic search were undertaken in Medline, CINAHL, Embase, plus Google scholar and Google images. There were no date limits; searches were confined to English language. Published and unpublished literature meeting the PCC framework were included. Screening and extraction of data were performed by two independent reviewers (SAF and SY). Studies were categorised inductively and results collated descriptively. Ethical approval was obtained from the NHS HRA and HCRW (ref: 21/LO/0459). Results 19,753 titles and abstracts were screened; 929 underwent full text review; 308 peer-reviewed articles and grey literature documents were retained to build the intended model. The majority of these papers (212; 69%) provided simple process steps involving expertise/judgement, supply chain/access, administration, prescribing/deprescribing, rationalisation, repurposing. The remaining 96 papers warranted richer thematic analysis. Most studies took place in the UK, Australia or USA in home/community settings. Analysis illuminated detail about ‘hidden work’ (participants’ actions in medication management), ‘hot spots’ (problematic areas e.g. out-of-hours care and the reliance on carers) and ‘cold spots’ (areas with less attention such as whose responsibility for keeping carers informed of changes and what is adequate support for safe medicines use at home). Discussion/Conclusion There is a growing interest in how best to work together across boundaries to enable getting the right medication to the right person at the right time and place. This scoping review documents the existing evidence of intended processes and a model of ideal prescribing and medication use in symptom control in palliative care. This study is limited to adult palliative care services only. A strength of the study is the use of JBI methodology. Using ethnographic methods and the conceptual tools of Activity Theory, we will refine this intended model with a study of what happens in practice3 to build a theoretically-informed, empirically-evidenced model of medication management across palliative care contexts.

Practice patterns, experiences, and challenges of German oncology health care staff with smoking cessation in patients with cancer: a cross-sectional survey study.

Often, cancer patients do not receive education about the negative consequences of smoking on the treatment outcome. To support cancer patients in the process of smoking cessation, it is essential to involve oncology staff. This study aims to learn about the experiences and attitudes from the point of view of oncology staff and, thus, how a smoking intervention should be designed. The study aims to engage all oncology staff due to the unclear responsibility for providing smoking cessation education, support, and motivating cancer patients to quit smoking. N = 354 German oncology staff (oncologists, nurses, psycho-oncologists, others) filled out a 5-point Likert scale-based questionnaire regarding practices, potential barriers, and attitudes towards smoking cessation between October 2021 and June 2022. The questionnaire was developed by Derksenet al. (2020), translated and slightly modified for the use of this study. It was distributed to all leading oncology staff in our Cancer Center Network with a request to share with alloncology staff. Flyers were also handed out in all oncology wards and outpatient clinics in the same Cancer Center Network. Most oncology staff ask cancer patients about their current smoking status (curative, M = 2.27; SD = 1.59; palliative, M = 2.90; SD = 1.83), but they rarely treat or refer patients for a smoking cessation intervention (curative, M = 4.78; SD = 1.20; palliative, M = 4.99; SD = 1.06). Smoking behavior of curative cancer patients is addressed more than that of palliative cancer patients (d = - 37). Regression analyses of key dependent variables showed that profession, setting, and the belief that continued smoking affects treatment outcome explained the variance of asking patients if they smoke, advising to stop smoking and lack of time (without profession). Involving oncology staff in motivating cancer patients who smoke to quit and referring them to smoking cessation services should take the different attitudes and knowledgeof the staff into account to improve treatment that supports tobacco cessation. Cancer patients have special needs when it comes to a cessation program. In the long term, survivors will benefit from tailored smoking cessation education and services provided by oncology staff to help them quit smoking after a cancer diagnosis.

Requirements and expectations regarding the professional readiness of the nurse to provide palliative care to oncological patients

The nurses training in the field of palliative care is a prerequisite for qualified care and psychological support of incurable patients.Objective – to analyze the professional readiness of nurses in the field of palliative care provision depending on their competencies.Material and methods. The bibliosemantic method was applied. A survey of 20 nurses of the Chernivtsi Regional Clinical Oncology Hospital was conducted to determine their readiness to work with incurable patients in 3 areas: capability, willingness, and resilience [10].Results. The main structural elements of the competency approach to the professional readiness of a nurse in the palliative field are based on thorough knowledge of palliative care, understanding of the essence of phenomena, practical skills and abilities in this field, the ability to choose action methods that are adequate to specific circumstances, spiritual and emotional stability, individual empathy and compassion, a sense of responsibility for the obtained results, constant self-improvement through self/learning and purposefulness. The analysis of 3 scales (ability, readiness and stability) showed high internal consistency and readiness to work in the conditions of the oncology hospital of 95% of the surveyed nurses. Conclusion. A competent approach in the nurse practical activities with an empathetic, spiritual and personal peculiarities to the medical support of palliative patients is a fundamental criterion of professional suitability.

The Antineoplastic Effect of Heparin on Colorectal Cancer: A Review of the Literature.

Heparin and derivatives are commonly used for thrombophylaxis in surgical colorectal cancer (CRC) patients. Recent studies have suggested that, besides its protective effect on the incidence of venous thromboembolism, heparin has an anti-cancer effect. The aim of this review was to explore the literature and report the antineoplastic effect of heparin and derivatives on CRC. MEDLINE and EMBASE databases were searched for relevant articles. Nineteen studies were included (n = 19). Fifteen were lab studies conducted in vivo or in vitro on CRC cell lines and/or mice (n = 15). Four were in vivo clinical studies (n = 4). CRC tumor growth was reduced by 78% in one study, (p < 0.01), while tumorigenesis was suppressed in heparin-treated mice in seven studies. A high dose of low molecular weight heparin for extended duration significantly reduced post-operative VEGF, suggesting that such a regime may inhibit tumor angiogenesis and distant metastasis. A randomized trial demonstrated the antineoplastic effect of nadroparin as the 6 month survival in palliative patients increased. Another study has reported that disease-free survival of CRC patients was not affected by a similar tinzaparin regime. The anti-cancer properties of heparin and derivatives are promising, especially in lab studies. Further clinical trials are needed to investigate the anti-cancer benefit of heparin on CRC.

HPB P44 Case Report: Retrograde transhepatic duodenal and antegrade common bile duct stenting in malignant duodenal stricture

Abstract Background Duodenal adenocarcinoma is a rare and aggressive malignancy, that unfortunately often present late meaning diagnosis can be delayed and commonly have no curative surgical options available. Patients with non resectable disease typically have a life expectancy from 2-8 months. In these palliative patients, antegrade stenting of the malignant stricture can effectively relieve symptoms of gastric outlet obstruction. We present retrograde transhepatic duodenal stenting in a patient where antegrade stenting had failed. Methods A 68 year old woman presented with abdominal pain, vomiting and weight loss, was found to have gastric outlet obstruction on imaging and subsequently diagnosed with D1 duodenal adenocarcinoma. Multiple attempts at dilatation had failed and one failed attempt at antegrade stenting to relieve their symptoms. A novel technique of retrograde transhepatic stenting of duodenal stricture and antegrade common bile duct (CBD) was then successfully performed with no post procedure complications. Not only did this help alleviate the patients’ symptoms but allowed subsequent antegrade passage of a D3 stent from a subsequent obstruction. Results Retrograde transhepatic duodenal stenting was carried out under general anesthesia with a right percutaneous puncture to pass a guide wire into the intrahepatic ducts, then the CBD narrowing followed by the duodenal stricture. The duodenal stricture was then stented followed by the CBD stricture and a drain left in the common hepatic duct. Conclusions Although duodenal adenocarcinoma is rare, it should be considered in all patients with suspected gastric outlet obstruction. A multidisciplinary team approach is necessary in managing patients with duodenal strictures. Retrograde transhepatic duodenal should be considered in palliative patients when antegrade stenting fails.

Evaluating the effects of dyadic intervention for informal caregivers of palliative patients with lung cancer: A systematic review and meta-analysis.

To investigate the effects of dyadic intervention on anxiety, depression, care burden and quality of life in informal caregivers of palliative patients with lung cancer. Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients. Dyadic intervention has the potential for improving them but the overall effect is unclear. A systematic review and meta-analysis. All randomized controlled trials were retrieved from the following databases until 4 May 2023: Web of Science, Embase Ovid, PubMed, Cochrane Central Register of Randomized Controlled Trials, Weipu, Wanfang and Chinese National Knowledge Infrastructure databases. This review was performed by Stata 12.0 and Review Manager 5.3. Thirteen randomized controlled trials were in accordance with the inclusion and exclusion criteria (n = 1807). The results revealed that dyadic intervention significantly improved family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer. There was no significant difference in quality of life between the dyadic intervention group and family caregivers who did not receive the dyadic intervention. Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer.

Subcutaneous ketamine infusion in palliative patients for major depressive disorder (SKIPMDD)-Phase II single-arm open-label feasibility study.

Ketamine at subanaesthetic dosages (≤0.5mg/kg) exhibits rapid onset (over hours to days) antidepressant effects against major depressive disorder in people who are otherwise well. However, its safety, tolerability and efficacy are not known for major depressive disorder in people with advanced life-limiting illnesses. To determine the feasibility, safety, tolerability, acceptability and any antidepressant signal/activity to justify and inform a fully powered study of subcutaneous ketamine infusions for major depressive disorder in the palliative setting. This was a single arm, open-label, phase II feasibility study (Australian New Zealand Clinical Trial Registry Number-ACTRN12618001586202). We recruited adults (≥ 18-years-old) with advanced life-limiting illnesses referred to four palliative care services in Sydney, Australia, diagnosed with major depressive disorder from any care setting. Participants received weekly subcutaneous ketamine infusion (0.1-0.4mg/kg) over two hours using individual dose-titration design. Outcomes assessed were feasibility, safety, tolerability and antidepressant activity. Out of ninety-nine referrals, ten participants received ketamine and were analysed for responses. Accrual rate was 0.54 participants/month across sites with 50% of treated participants achieving ≥ 50% reduction in baseline Montgomery-Åsberg Depression Rating Scale, meeting feasibility criteria set a priori. There were no clinically relevant harms encountered. A future definitive trial exploring the effectiveness of subcutaneous infusion of ketamine for major depressive disorder in the palliative care setting may be feasible by addressing identified study barriers. Individual dose-titration of subcutaneous ketamine infusions over two hours from 0.1mg/kg can be well-tolerated and appears to produce transient antidepressant signals over hours to days.

‘Thank you for loving me’: A qualitative study on perceptions of gratitude and their effects in palliative care patients and relatives

Background: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. Aim: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. Design: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. Settings/participants: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. Results: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. Conclusion: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care.

Pathophysiological features of neuroendocrine tumors in cyanotic congenital heart disease: a systematic review

Abstract Background Patients with cyanotic congenital heart disease (CCHD) have an increased risk to develop pheochromocytomas or paragangliomas (PPGL), which are rare neuroendocrine tumours molecularly driven by the activation of the hypoxia-inducible factor 2-alpha (HIF-2α ). Purpose To define the clinical characteristics of CCHD-PPGL patients. Methods An international multicentre CCHD-PPGL consortium from 8 countries was stablished. The group performed a systematic review of clinic-pathological features of 149 CCHD-PPGL cases and compared to 1559 CCHD non-PPGL patients. Results CCHD-PPGL were predominantly women (56.4%) with univentricular heart (UVH) (55.0%), followed by tetralogy of Fallot (23.5%). Most patients remained unoperated (28.6%) or had only undergone a palliative procedure (25.8%), and the mean saturation at diagnosis was 84.0%. The median age at PPGL diagnosis was 27.0 yo [20-38]. Pheochromocytoma (PCC) occurred in 36.9% of patients, abdominal or thoracic paraganglioma (TA-PGL) in 40.3%, carotid body paraganglioma (CB-PGL) in 14.7% and a combination in 8.0%. Most CB-PGLs were non-secreting, non-symptomatic tumors while PCC and TA-PGL were mostly noradrenalin-secreting and symptomatic tumors. Metastatic disease was documented in 10.3% of non-CB and none in CB-PGL . Comparing to patients with PCC or TA-PGL, CB-PGL patients were predominantly female (81.8% vs 52.0%), older at time of diagnosis (43 yo [36.0 – 52.0] vs 25.0 yo [19.0-35.0], p&amp;lt;0.01) and with a longer period of cyanosis at diagnosis (37.0 [23-47] vs 23.0 [13-46], p&amp;lt;0.01). Patients with Fontan procedure were mostly men (63.3%) who developed a noradrenalin-secreting PCC or a TA-PGL (42.0% and 58.0% respectively) at an earlier age than non-Fontan patients (22.0yo [18.0-27.0] vs 29.0yo [21.0-41.0], p&amp;lt;0.01). Patients with Eisenmenger physiology were female patients (100%) who developed mostly CB-PGL, non-secreting tumors (54.5%) and were older at diagnosis (48.0 yo [42-58]). Compared to a cohort of 1599 CCHD non- PPGL patients, CCHD-PPGL were predominantly women (57.7% vs 44.8%, p&amp;lt;0.01), with forms of UVH (53.7% in CCHD-PPGL vs 14.1% in CCHD, p &amp;lt;0.01 ) and were mainly unoperated and palliated patients (27.1% and 26.4% respectively vs 10.0% and 5.3% in CCHD, p &amp;lt;0.01). CCHD-PPGL patients showed lower levels of oxygen saturation (80.0% [76.0-85.0] vs 84.0% [80.0-88.0], p&amp;lt;0.01) and higher haematocrit levels (60.0% [52.0-66.5] vs 53.3% [46.3-62.0], p&amp;lt;0.01) than CCHD without PPGL. Conclusions Patients with CCHD and lifelong cyanosis, and especially those with Eisenmenger physiology, probably develop CB-PGL as an adaptive response to chronic systemic hypoxemia, present a good clinical course, and usually do not require an initial surgical approach. In patients with Fontan circulation, the risk of developing a sympathetic thoracic-abdominal PPGL persists, despite correction of hypoxemia, possibly due to the initial hypoxemia during adrenal medulla post-natal development.

Prospective Study of Preferred Versus Actual Place of Death Among Swedish Palliative Cancer Patients.

Background: The place of death of cancer patients is an important aspect of end-of-life care. However, little research has been conducted regarding factors that may influence the preferred and actual place of death in cancer patients and whether the patients die at their preferred place of death. In this study, we aimed to investigate the preferred and actual place of death for palliative cancer patients, and factors influencing these variables. Methods: Patients diagnosed with cancer and admitted to a palliative care team across three Swedish cities between 2019 and 2022 were asked for participation. Participants completed a questionnaire capturing sociodemographic data and preferred place of death. Further data regarding age, sex, and cancer type were collated at inclusion, and the actual place of death recorded for those deceased by 5-May-2023. Results: The study included 242 patients. A majority (79%) wanted to die at home which was the actual death location for 76% of the patients. When the place-of-death decision was made by the patient alone, 75% chose home, compared to 96% when decided jointly with relatives-a statistically significant variation (p = 0.0037). For the patients who wanted to die at home, 80% actually died at home, with insignificant disparities among subgroups. Conclusions: Most palliative cancer patients in this Swedish cohort preferred and achieved death at home. Involving relatives in decision-making may influence the preferred place of death, however larger studies are needed to comprehensively assess factors affecting the preferred and actual place of death in different subgroups of patients.

Caregiver strain among patients of palliative care in Sri Lanka: validation of modified caregiver strain index - Sinhala version

BackgroundCare givers of Palliated patients are at risk of adverse physical, psychosocial and emotional sequelae in varied nature. Efficient and valid assessment tools facilitate early detection to take corrective measures. The Modified Caregiver Strain Index (MCSI), composed of domains associated with caregiver strain is a simple and brief tool that can be used in both clinical and field settings. This study aimed to adapt and validate this in order to cater effective palliative care services in Sri Lanka.MethodsAfter cross-cultural adaptation, 200 primary caregivers in 3 teaching hospitals were recruited. The internal consistency, item-total correlations, of the 13-item S-MCSI were performed. The criterion validity was assessed by Pearson correlation between the total scores of S-MCSI, the Karnofky Performance Scale and the Barthel index. Construct validity was determined by the principal component analysis keeping the Varimax with Keiser normalization as the rotation method. The Kaiser-Meyer-Olkin test (KMO) and Bartlett’s test of sphericity statistics were also performed to determine the adequacy of the sample and correlations between items, respectively. The number of factors was determined by the Scree plot, percentage of variance explained by each component and number of Eigen values over 01 (Kaiser-Guttman rule).ResultsThe total MCSI score ranged 0 to 26. The overall Cronbach’s alpha of the 13-item questionnaire was 0.80 while item-total corrections ranged 0.34 to 0.62, exception of one item (0.11). Inverse correlations were demonstrated in total scores of MCSI and Karnofky Performance Scale (r =- 0.32, p < 0.001) and Barthel index (r =-0.34, P < 0.001). A Kaiser-Meyer-Olkin value of 0.79 (p < 0.001) for Bartlett’s test indicated adequate sampling and nonlinearity of factors. The Scree plot showed a three-factor structure explaining 57% of the variation. Items regarding personal wellbeing of caregiver loaded together while the effects on the family loaded separately. Adjustment of personal concerns and family issues along with time alteration grouped as the third factor.ConclusionsThe study showed that the Sinhala version of MCSI has adequate psychometric properties and reliability to be used as a validated tool to estimate the caregiver burden within a short time period for any health care workers.