BRIEF REPORT | doi:10.20944/preprints201811.0341.v1
Subject: Medicine & Pharmacology, Gastroenterology Keywords: colorectal cancer; new technologies; palliative care for colorectal cancer patients; stenting
Online: 15 November 2018 (04:59:37 CET)
BACKGROUND: Endoscopic placement of Self Expandable Metal Stents to relieve malignant colorectal obstruction has become a common therapeutic advancement in clinical practice. MATERIAL: In a 16 year period 167 patients had endoscopic placement of a Self Expandable Metal Stent in a center where gastroenterologists and surgeons cooperate in a daily basis, discussing indications. RESULTS: There was no operative mortality and no major complication in placement of the stent. Technical and clinical success was respectively 95.1% and 92.9%. Consultation among specialists changed the preoperative indication in 60 patients, during the same time period. CONCLUSIONS: Self expandable metal stents placement represents an important tool to treat patients with obstructing colorectal cancer and complications after colorectal resection . A proper training is required, and this training in operative endoscopy is not always available and possible. In this scenario, a close collaboration among specialists in selecting the most appropriate operative procedure is essential and brings to better results.
REVIEW | doi:10.20944/preprints201712.0172.v1
Subject: Medicine & Pharmacology, Anesthesiology Keywords: palliative care team; seriously ill patients; end-of-life; quality of life; symptom relief; acute palliative care unit; cost savings
Online: 25 December 2017 (08:50:18 CET)
Traditionally, palliative care (PC) systems focused on the needs of advanced cancer patients. But, most patients needing PC have end-stage organ diseases. Similarly, PC models focused on the needs of patients in hospice or at home; however, in most cases PC is provided in acute hospitals. Indeed, the symptom burden that these patients experience in the last year of life frequently forces them to seek care in Emergency Department. The majority of them are admitted to the hospital and many die. This issue poses important concerns. Despite the efforts of attending healthcare professionals, inhospital patients do not receive optimal care near the end-of-life. Also, evidence is emerging that delay in identifying patients needing PC have a detrimental impact on their quality of life (QoL). Therefore, there is an urgent need to early and properly identify these patients among those hospitalized. Several trials reported the efficacy of PC in improving the QoL in these patients. Each hospital should ensure that a multidisciplinary PC team is available to support attending physicians to achieve the best QoL for both PC patients and their families. This review discusses the role and the impact of inhospital PC in patients with end-stage disease or advanced cancer.
ARTICLE | doi:10.20944/preprints202301.0285.v1
Subject: Medicine & Pharmacology, Oncology & Oncogenics Keywords: head and neck cancer; multidisciplinary therapeutic approach; palliative care
Online: 16 January 2023 (12:52:20 CET)
Most head and neck cancers are diagnosed in advanced stages, when the curative interventions are no longer possible. The assessment and the multidisciplinary therapeutic approach of the locally advanced cases are difficult since the onset of the disease becomes a significant challenge for the whole attending team (including both the patient and his family) because they have to deal with to an extensive symptomatology (abundant secretions, refractory pain, mutilations predominantly in the cephalic area), with the cure of stomas (tracheostomy, gastrostomy) and with various post-therapeutic sequelae. The present paper reflects the impact of late diagnosis, the complexity of the multimodal specific oncological treatment (chemotherapy, radiotherapy, immunotherapy, pal-liative and terminal treatment), the adaptation of medical care to the psycho-emotional structure, having as an example the case of 54-year old patient (with his consent) diagnosed with pharyn-golaryngeal neoplasm who presented himself to “St. Luca” Chronic Disease Hospital, the Oncol-ogy-Palliative Care Department, in September 2021. In patients with locally advanced head and neck cancers, besides the specifically oncological therapeutic decisions, the empathic-emotional connection between the medical team with the patient and his family plays a key role in the ther-apeutic conduct.
REVIEW | doi:10.20944/preprints201808.0293.v1
Subject: Medicine & Pharmacology, Oncology & Oncogenics Keywords: Keywords: palliative care, child, brain, neoplasm, neuropathic pain, pain, symptoms, hospice
Online: 16 August 2018 (15:14:46 CEST)
Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice can and should be developed by all providers of neuro-oncology care. This chapter will review the fundamentals of providing primary palliative care
ARTICLE | doi:10.20944/preprints202103.0445.v1
Subject: Medicine & Pharmacology, Allergology Keywords: Causality; Clinical Predisposing Factors; Delirium; Palliative Care
Online: 17 March 2021 (14:46:06 CET)
Delirium occurs in 50-80% of end-of-life patients but it is often misdiagnosed. Identification of clinical factors potentially associated with delirium onset can lead to a correct early diagnosis. To this aim, we conducted an observational prospective study on patients from an Italian Palliative Care Unit (PCU) in 2018-2019 and evaluated the presence of clinical factors at patients’ admission. We then compared their presence in patients who developed delirium and in those who did not during follow-up. On 503 enrolled patients, 95 (18.9%) developed delirium. In univariate analyses, factors significantly more frequent in patients with delirium were advanced age, care in hospice, very compromised performance status, hypoxia, high number of simultaneous clinical factors, presence of breathlessness, poor well-being, severe drowsiness, and background therapy with haloperidol and drugs acting on CNS. In multivariate analyses, setting of care (odds ratio, OR, 1.68 for hospice versus home care, 95% confidence interval, CI 1.02-2.75; p=0.040), and administration of psychiatric drugs (OR 1.74 for administration versus no administration, 95% CI 1.08-2.81; p=0.023) were significantly associated with the risk of developing delirium, while the associations with age (OR 1.82 for > 80 years versus ≤ 70 years, 95% CI=0.98-3.36; p=0.046) and presence of breathlessness (OR 1.70, 95%, CI 0.99-2.89, p=0.053) were of borderline significance. The study indicates that some clinical factors are associated with the probability of delirium onset. Their evaluation in PC patients could help the healthcare professionals to timely identify the development of delirium in those patients.
REVIEW | doi:10.20944/preprints202102.0263.v1
Subject: Medicine & Pharmacology, Allergology Keywords: neonatal palliative care; Doctrine of Double Effect; perinatal palliative care; neonatal end-of-life care
Online: 10 February 2021 (15:38:55 CET)
Neonatal palliative care (NPC) is an integrated and holistic approach that is an integral part of the contemporary neonatal treatment delivery paradigm. It is the highest fulfillment of the notion of beneficence (doing or creating 'good') that has otherwise been neglected/underestimated by the focus of modern medicine on technology and instrumental treatments by its commitment to alleviating patient pain and quality of life. For decades, the Double-Effect Doctrine (DDE) has been used to consider and address a range of ethically questionable circumstances, often at the end of life, including euthanasia, termination of pregnancy to save maternal life, and morally justified warfare. The theory has continued to be mired in controversy as ethicists, legal scholars, theologians, and philosophers discuss the abstract concepts of moral reasoning, purpose, foresight, and other underlying moral theories. In this paper, the moral theory of DDE is discussed in its clinical application to the ethical decision-making process in neonatal palliative and end-of-life treatment, specifically 1) the administration of opioids as required for symptom control and 2) the use of palliative sedation for intractable symptom care.
ARTICLE | doi:10.20944/preprints201809.0423.v1
Subject: Medicine & Pharmacology, Other Keywords: palliative and end-of-life care; older adults; advance care planning (ACP); health care professionals.
Online: 20 September 2018 (16:59:45 CEST)
This paper reports the findings from a pilot study designed to explore the barriers, facilitators and similarities with the delivery and implementation of two distinct models of Advance Care Planning (ACP) documentation for older adults in their last year of life used by health care professionals in their clinical practice. PACe (Proactive Anticipatory Care Plan): a GP led model and PEACE (Proactive Elderly Persons’ Advisory CarE): a nurse led model with community geriatrician oversight were used by participants in their clinical practice. Telephone interviews were conducted with general practitioners (GPs) to explore their views of using the PACe tool. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. GPs and admission avoidance matrons were employed by Clinical Commissioning Groups (CCGs) and all study participants were recruited from the South East of England where data collection took place in 2015. Nine telephone interviews and two face-to-face interviews (one joint and one individual) were conducted with twelve participants. The data was analysed thematically. Participants highlighted the similarity of both tools in providing focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme-established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable conversations of this nature. Using both tools enabled participants to think critically and reflect on their own practice was another theme identified. Notwithstanding participants’ views to improve the layout of both tools, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a barrier which focused on the problems with access to paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpin ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care was put forward as the solution.
ARTICLE | doi:10.20944/preprints202012.0424.v1
Subject: Medicine & Pharmacology, Allergology Keywords: nursing homes; quality indicators; quality measurement; palliative care; quality of care; end of life care; advance care planning
Online: 17 December 2020 (11:07:43 CET)
An increasingly frail population in nursing homes accentuates the need for high quality care at the end of life and better access to palliative care in this context. Implementation of palliative care and its outcomes can be monitored by using quality indicators. Therefore, we developed a quality indicator set for palliative care in nursing homes and a tailored measurement procedure using a mixed-methods design. We developed the instrument in three phases: 1) literature search, 2) interviews with experts and 3) indicator and measurement selection by expert consensus (RAND/UCLA). Second, we pilot tested and evaluated the instrument in nine nursing homes in Flanders, Belgium. After identifying 26 indicators in the literature and expert interviews, 19 of them were selected through expert consensus. Setting-specific themes were advance care planning, autonomy and communication with family. The quantitative and qualitative analyses showed the indicators were measurable, had good preliminary face validity and discriminative power and were considered useful in terms of quality monitoring according to the caregivers. The quality indicators can be used in a large implementation study and process evaluation in order to achieve continuous monitoring of the access to palliative care for all residents in nursing homes.
ARTICLE | doi:10.20944/preprints202004.0519.v1
Subject: Medicine & Pharmacology, Sport Sciences & Therapy Keywords: Palliative Care; Physical Therapy; End-of-Life Care; Non-pharmacological Intervention; Physiotherapy
Online: 30 April 2020 (08:42:54 CEST)
Abstract The aim of this research is to conduct a systematic review analysing the role of the physiotherapy interventions in palliative care. PRISMA as a critical appraisal tool was utilised for the selection of the research articles. The inclusion criteria were based on the year of publication, ease of availability, language, geographical location, and study type. To ensure the credibility, databases such as Elsevier, Proquest, and EBSCO Host were used to filter the grey content. Data published in the past ten years (2009-onwards) was only included to ensure the selection of the most recent interventions used by the physiotherapists. A total of 11 articles were selected which determined that physiotherapy interventions involving breathing exercises, aerobic exercises, manual therapies, and educational awareness were critical to promoting the functional capability and empower the patients.
ARTICLE | doi:10.20944/preprints202107.0707.v1
Subject: Behavioral Sciences, General Psychology Keywords: Palliative care; Meaning therapy; CALM therapy; COVID-19; Existential positive psychology; Good death; wellbeing; mature happiness; flourishing
Online: 30 July 2021 (14:27:09 CEST)
The COVID-19 pandemic has exposed the inadequacies of the current healthcare system and needs a paradigm change, which is holistic, and community based illustrated by the healing wheel. The present paper proposes that existential positive psychology (PP 2.0) represents a promising approach to meet the rising needs in palliative care. This framework has a twofold emphasis on (a) How to transcend and transform suffering as the foundation for wellbeing, and (b) how to cultivate our spiritual and existential capabilities to achieve personal growth and flourishing. We propose that these objectives can be achieved simultaneously through dialectical palliative counselling, as illustrated by Wong’s integrative meaning therapy (Wong, 2020) and Lo’s Conceptual Model of CALM Therapy in palliative care (Lo et al., 2014). We then discuss existential suffering in general and at the last stage of life in particular; we also review recent research and interventions on existential suffering in palliative patients. Finally, we outline the objectives and the strategies of IMT in providing palliative counselling for palliative care and hospice patients.
REVIEW | doi:10.20944/preprints201708.0084.v2
Subject: Medicine & Pharmacology, Veterinary Medicine Keywords: euthanasia; veterinary ethics; medical ethics; end-of-life; assisted suicide; palliative care; assisted dying
Online: 7 December 2017 (05:20:50 CET)
Not a lot is known about either death or the dying process. Politicians and many in the medical profession in the UK tend to shy away from interfering with it by not allowing euthanasia as an end of life option for the patient. This is the first paper in a series of two, comparing the situation in human medicine and veterinary medicine, in which euthanasia is well practiced for relieving suffering at the end of an animal’s life. This first part takes the form of a literature review including best practice around end of life care, its deficiencies and the need for assisted dying. Veterinary surgeons are well trained in the ethics of euthanasia and put it to good use in the best interest of their animal patients. In countries which have legalized physician assisted suicide for the terminally ill reporting indicates that it works well, without increases in involuntary euthanasia and most importantly without intimidation of the vulnerable. However, there is still an ever increasing tendency to overuse sedation and opioids at the end of life, which merits further investigation. With advances in medical science able to significantly prolong the dying process, patient autonomy demands a review of the law in the UK.
ARTICLE | doi:10.20944/preprints201708.0094.v2
Subject: Medicine & Pharmacology, Veterinary Medicine Keywords: euthanasia; veterinary ethics; medical ethics; end-of-life; assisted suicide; palliative care; assisted dying; moral stress
Online: 1 December 2017 (16:58:27 CET)
This is the second of a series of two papers comparing the end of life issues in human and veterinary medicine. We outline the main differences between human and animal patients such as patient communication, finance and ‘conflicts of interest’ between animal, owner and veterinarian. We discuss striking similarities between human and veterinary issues such as assessing quality of life and the primary role of the attending veterinarian or doctor being the welfare and care of the patient. This paper takes the form of an ethical argument in favour of allowing euthanasia in human medicine, by providing insights into end of life issues for humans from an independent veterinary perspective. Veterinary surgeons are well trained in the ethics of euthanasia and put it to good use in the best interest of their animal patients. Doctors in the UK are limited and unwilling to put forward a case for the option of euthanasia for those patients who face a slow and agonizing death. With advances in medical science being able to significantly prolong the dying process, autonomy for the patient demands a review of the law regarding patient choice in the UK.
ARTICLE | doi:10.20944/preprints201712.0004.v1
Subject: Medicine & Pharmacology, Pediatrics Keywords: resuscitation planning; paediatric palliative care; advance care planning
Online: 1 December 2017 (10:25:12 CET)
Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in pediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children’s Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented (RP). This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (PICU or home) influenced the development of resuscitation plans. Patients referred to the paediatric palliative care (PPC) service had a significantly longer time interval from documentation of a resuscitation plan to death and were more likely to die at home. All of the patients who died in the paediatric intensive care unit (PICU) had a RP which was documented within the last 48 hours of life. Most RPs were not easy to locate. Documentation of discussions related to resuscitation planning should accommodate patient and family centered care based on individual needs. With varied diagnoses and settings of care, it is important that there is inter-professional collaboration (particularly involving PICU and PPC services) in developing protocols of how to manage this difficult but inevitable clinical scenario.
ARTICLE | doi:10.20944/preprints202012.0724.v1
Subject: Medicine & Pharmacology, Allergology Keywords: Palliative care; Delphi technique; Needs Assessment; Home Care Services; coordinated care; complexity; methodological study.
Online: 29 December 2020 (09:25:59 CET)
Capturing complexity is both a conceptual and a practical challenge in palliative care. The HexCom model has proved to be an instrument with strong reliability and valid for describing the needs and strengths of patients in home care. In order to explore whether it is also perceived to be helpful in enhancing coordinated and patient-centered care at a practical level, a methodological study was carried out to assess the face validity of the model. Particularly, a Delphi method involving a group of 15 experts representing the full spectrum of healthcare professionals involved in palliative care was carried out. The results show that there is a high level of agreement, with a Content Validity Index-Item greater than 0.92 both with regard to the complexity model and the HexCom-Red, HexCom-Basic and HexCom-Clin instruments, and higher than 0.85 regarding the HexCom-Figure and the HexCom-Patient instruments. This consensus confirms that the HexCom model and the different instruments that are derived from it are valued as useful tools for a broad range of healthcare professional in coordinately capturing of complexity in healthcare practice.
ARTICLE | doi:10.20944/preprints202012.0809.v1
Subject: Life Sciences, Biochemistry Keywords: Long-term care; care homes; nursing homes; dementia; quality improvement; palliative care
Online: 31 December 2020 (13:16:03 CET)
Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die. We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing homes in Flanders, and their palliative care service use and comfort in the last week of life. We used two retrospective epidemiological studies, including 198 residents in 2010 and 183 in 2015, who died with dementia in representative samples of nursing homes in Flanders. We found a 23%-point increase in dementia prevalence (P-value<0.001), with a total of 11%-point decrease in severe to very severe cognitive impairment (P=0.04). Controlling for this difference in resident characteristics, in the last week of life, there were increases in the use of pain assessment (+20%-point; P<0.001) and assistance with eating and drinking (+10%-point; P=0.02) but no change in total comfort. The higher prevalence of dementia in nursing homes with no improvement in residents’ total comfort while dying emphasize an urgent need to better support nursing homes in improving their capacities to provide timely and high-quality palliative care services to more residents dying with dementia.
REVIEW | doi:10.20944/preprints201806.0134.v1
Subject: Medicine & Pharmacology, Anesthesiology Keywords: chronic pediatric pain; low income country; middle income country; low and middle income country; pediatric palliative care.
Online: 8 June 2018 (12:45:24 CEST)
Chronic pain is a serious health concern and potentially debilitating condition, leading to anxiety, depression, reduced productivity and functionality, and poor quality of life. This condition can be even more detrimental and incapacitating in the pediatric patient population. In low and middle income countries (LMICs), pain services are inadequate or unavailable, leaving most of the world's pediatric population with chronic pain untreated. Many of these children in LMICs are suffering without treatment, and often die in pain. Awareness and advocacy for this population must be prioritized. We reviewed the available literature on the chronic pediatric pain burden in LMICs, barriers to treatments, and current efforts to treat these patients.