Search results for: hospice and palliative care

Authors: C. Treadgold, S. Sivaraman

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The Starlight Children's Foundation (Starlight) is an Australian non-profit organisation that delivers programs, in partnership with health professionals, to support children, adolescents, and their families who are living with a serious illness. While supporting children and adolescents with life-limiting conditions has always been a feature of Starlight's work, providing a dedicated program, specifically targeting and meeting the needs of the paediatric palliative population, is a recent area of focus. Recognising the challenges in providing children’s palliative services, Starlight initiated a research and development project to better understand and meet the needs of this group. The aim was to create a program which enhances the wellbeing of children, adolescents, and their families receiving paediatric palliative care in their community through the provision of on-going, tailored, positive experiences or 'moments'. This paper will present the results of the formative evaluation of this unique program, highlighting the development processes and outcomes of the pilot. The pilot was designed using an innovation methodology, which included a number of research components. There was a strong belief that it needed to be delivered in partnership with a dedicated palliative care team, helping to ensure the best interests of the family were always represented. This resulted in Starlight collaborating with both the Victorian Paediatric Palliative Care Program (VPPCP) at the Royal Children's Hospital, Melbourne, and the Sydney Children's Hospital Network (SCHN) to pilot the 'Moments' program. As experts in 'positive disruption', with a long history of collaborating with health professionals, Starlight was well placed to deliver a program which helps children, adolescents, and their families to experience moments of joy, connection and achieve their own sense of accomplishment. Building on Starlight’s evidence-based approach and experience in creative service delivery, the program aims to use the power of 'positive disruption' to brighten the lives of this group and create important memories. The clinical and Starlight team members collaborate to ensure that the child and family are at the centre of the program. The design of each experience is specific to their needs and ensures the creation of positive memories and family connection. It aims for each moment to enhance quality of life. The partnership with the VPPCP and SCHN has allowed the program to reach families across metropolitan and regional locations. In late 2019 a formative evaluation of the pilot was conducted utilising both quantitative and qualitative methodologies to document both the delivery and outcomes of the program. Central to the evaluation was the interviews conducted with both clinical teams and families in order to gain a comprehensive understanding of the impact of and satisfaction with the program. The findings, which will be shared in this presentation, provide practical insight into the delivery of the program, the key elements for its success with families, and areas which could benefit from additional research and focus. It will use stories and case studies from the pilot to highlight the impact of the program and discuss what opportunities, challenges, and learnings emerged.

Keywords: children, families, memory making, pediatric palliative care, support

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Authors: Tulika Bhattacharyya, Suhita C. Chatterjee

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West Bengal, one of the most rapidly ageing states in India, has inadequate structure for elder care. Therefore, there is an urgent need to improve elder care which involves focusing on different care settings where the elderly exists, like - Homes, Hospitals and Long-Term Care facilities (e.g. - Old Age Homes, Hospices). The study explores various elder care settings, with the intention to develop an understanding about them, and thereby generate comprehensive information about the entire spectrum of elder care in Kolkata. Empirical data are collected from the elderly and their caregivers in different settings. The tools for data collection are narratives, in-depth interviews and focus group discussions, along with field observations. Mixed method design is adopted to analyze the complexities of elder care in different set ups. The major challenges of elder care in private Homes are: architecturally inadequate housing conditions, paucity of financial support and scarcity of skilled caregivers. While the key factors preventing the Hospital and Long-Term Care Facilities from providing elder care services are inadequate policies and set governmental standards for elder care for the hospitalized elderly in various departments of the Hospital and the elderly residing in different kinds of Long Term Care Facilities. The limitations in each care setting results in considerable neglect and abuse of the elderly. The major challenges in elder care in West Bengal are lack of continuum between different care settings/ peripheral location of private Homes within public health framework and inadequate state Palliative policy- including narcotic regulations. The study suggests remedial measures to improve the capacity to deliver elder care in different settings.

Keywords: elder care settings, family caregiver, home care, geriatric hospital care, long term care facility

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Authors: D. M. Lewis, L. Frisby, U. Stead

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Objective: Many patients are receiving invasive treatments in acute care or are dying in hospital without having had comprehensive goals of care conversations. Some of these treatments may not align with the patient’s wishes, may be futile, and may cause unnecessary suffering. While many staff may recognize the benefits of engaging patients and families in Serious Illness Conversations (a goal of care framework developed by Ariadne Labs in Boston), few staff feel confident and/or competent in having these conversations in acute care. Another barrier to having these conversations may be due to a lack of incorporation in the current workflow. An educational exercise, titled the Two Question Challenge, was initiated on four medical units across two Vancouver Coastal Health (VCH) hospitals in attempt to engage the entire interdisciplinary team in asking patients and families questions around goals of care and to improve the documentation of these expressed wishes and preferences. Methods: Four acute care units across two separate hospitals participated in the Two Question Challenge. On each unit, over the course of two eight-hour shifts, all members of the interdisciplinary team were asked to select at least two questions from a selection of nine goals of care questions. They were asked to pose these questions of a patient or family member throughout their shift and then asked to document their conversations in a centralized Advance Care Planning/Goals of Care discussion record in the patient’s chart. A visual representation of conversation outcomes was created to demonstrate to staff and patients the breadth of conversations that took place throughout the challenge. Staff and patients were interviewed about their experiences throughout the challenge. Two palliative approach leads remained present on the units throughout the challenge to support, guide, or role model these conversations. Results: Across four acute care medical units, 47 interdisciplinary staff participated in the Two Question Challenge, including nursing, allied health, and a physician. A total of 88 questions were asked of patients, or their families around goals of care and 50 newly documented goals of care conversations were charted. Two code statuses were changed as a result of the conversations. Patients voiced an appreciation for these conversations and staff were able to successfully incorporate these questions into their daily care. Conclusion: The Two Question Challenge proved to be an effective way of having teams explore the goals of care of patients and families in an acute care setting. Staff felt that they gained confidence and competence. Both staff and patients found these conversations to be meaningful and impactful and felt they were notably different from their usual interactions. Documentation of these conversations in a centralized location that is easily accessible to all care providers increased significantly. Application of the Two Question Challenge in non-medical units or other care settings, such as long-term care facilities or community health units, should be explored in the future.

Keywords: advance care planning, goals of care, interdisciplinary, palliative approach, serious illness conversations

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Authors: Alexandru Grigorescu, Alexandra Protesanu

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Background: Approximately 34-67 percent of cancer patients experience an episode of uncontrolled pain during the course of their disease, depending on the stage. The aim is to provide evidence-based data for pain prevalence, diagnosis and treatment recommendations on an integrative model of medical oncology and palliative care for patients with cancer diagnostic in a day hospital. Patients and method: Consultation registers and electronic records of 166 Patients (Pts) were studied from April 2022 to March 2023. Pts with pain syndrome were selected. The pain was objectified by the visual pain scale. To elucidate the causes of the pain, investigations were carried out: bone scintigraphy, CT scan, and PET-CT. The analgesic treatments were represented by weak and strong morphine, radiotherapy, and bisphosphonates. Result: During the mentioned period, 166 oncological patients (74 women and 92 men) were treated in the oncology day hospitalization service. There were 1,500 consultations, 40 of which were only for pain. The neoplastic locations were: gynecological, malignant melanoma, breast, gastric, bronchopulmonary, colorectal, liver, pancreatic, bladder, and kidney. 70 Pts presented pain syndrome. The causes of the pain were represented by bone metastases, compressive tumors, and post-surgical status. Drug treatment: Tramadol 47 Pts, of which 10 switched to a major opioid (Oxycodonum, Morphine sulfate), 20 Pts were treated with Oxycodonum as the first intention. In 5 patients ry to rotated morphine, 20 Pts received palliative radiotherapy, 10 Pts were treated with bisphosphonates. 2 Pts required neurosurgery consultation for an antalgic intervention. 5 Pts had important adverse reactions to morphine. All patients and their families were advised by a medical oncologist and psychologist for a lifestyle change. Conclusions: The prevalence of pain was similar to that described in the literature. In most cases, the pain could be managed in the day hospital. Weak and strong morphine represented the main pain therapy. Palliative radiotherapy was the second most effective therapy. Treatment with bisphosphonates was useful. Surgical interventions were rarely indicated. Discussions with patients and their families regarding the lifestyle change were important.

Keywords: cancer pain, opioids, medical oncology, palliative care

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Authors: Tania Chalton

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In June 2013, an independent review of the Liverpool Care Pathway (LCP) identified a number of problems with the implementation of the LCP in the UK and recommended that it be replaced by individual care plans for each patient. As a result of the UK findings, in November 2013 the Ministry of Health (MOH) commissioned the Palliative Care Council to initiate a programme of work to investigate an appropriate approach for the care of people in their last days of life in New Zealand (NZ). The Last Days of Life Working Group commenced a process to develop national consensus on the care of people in their last days of life in April 2014. In order to develop its advice for the future provision of care to people in their last days of life, the Working Group (WG) established a comprehensive work programme and as a result has developed a series of working papers. Specific areas of focus included: An analysis of the UK Independent Review findings and an assessment of these findings to the NZ context. A stocktake of services providing care to people in their last days of life, including aged residential care (ARC); hospices; hospitals; and primary care. International and NZ literature reviews of evidence and best practice. Survey of family to understand the consumer perspective on the care of people in their last days of life. Key aspects of care that required further considerations for NZ were: Terminology: clarify terminology used in the last days of life and in relation to death and dying. Evidenced based: including specific review of evidence regarding, spiritual, culturally appropriate care as well as dementia care. Diagnosis of dying: need for both guidance around the diagnosis of dying and communication with family. Workforce issues: access to an appropriate workforce after hours. Nutrition and hydration: guidance around appropriate approaches to nutrition and hydration. Symptom and pain management: guidance around symptom management. Documentation: documentation of the person’s care which is robust enough for data collection and auditing requirements, not ‘tick box’ approach to care. Education and training: improved consistency and access to appropriate education and training. Leadership: A dedicated team or person to support and coordinate the introduction and implementation of any last days of life model of care. Quality indicators and data collection: model of care to enable auditing and regular reviews to ensure on-going quality improvement. Cultural and spiritual: address and incorporate any cultural and spiritual aspects. A final document was developed incorporating all the evidence which provides guidance to the health sector on best practice for people at end of life: “Principles and guidance for the last days of life: Te Ara Whakapiri”.

Keywords: end of life, guidelines, New Zealand, palliative care

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Authors: Maha Atout, Pippa Hemingway, Jane Seymour

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A preliminary systematic review shows that health professionals experience a tension when communicating with the parents and family members of children with life-threatening and life-limiting conditions. On the one hand, they want to promote open and honest communication, while on the other, they are apprehensive about fostering an unrealistic sense of hope. Defining the boundaries between information that might offer reasonable hope versus that which results in false reassurance is challenging. Some healthcare providers worry that instilling a false sense of hope could motivate parents to seek continued aggressive treatment for their child, which in turn might cause the patient further unnecessary suffering. To date, there has been a lack of research in the Middle East regarding how healthcare providers do or should communicate bad news; in particular, the issue of hope in the field of paediatric palliative care has not been researched thoroughly. This study aims to explore, from the perspective of patients’ mothers, physicians, and nurses, the experience of communicating and receiving bad news in the care of children with palliative care needs. Data were collected using a collective qualitative case study approach across three paediatric units in a Jordanian hospital. Two data collection methods were employed: participant observation and semi-structured interviews. The overall number of cases was 15, with a total of 56 interviews with mothers (n=24), physicians (n=12), and nurses (n=20) completed, as well as 197 observational hours logged. The findings demonstrate that mothers wanted their doctors to provide them with hopeful information about the future progression of their child’s illness. Although some mothers asked their doctors to provide them with honest information regarding the condition of their child, they still considered a sense of hope to be essential for coping with caring for their child. According to mothers, hope was critical to treatment as it helped them to stay committed to the treatment and protected them to some extent from the extreme emotional suffering that would occur if they lost hope. The health professionals agreed with the mothers on the importance of hope, so long as it was congruent with the stage and severity of each patient’s disease. The findings of this study conclude that while parents typically insist on knowing all relevant information when their child is diagnosed with a severe illness, they considered hope to be an essential part of life, and they found it very difficult to handle suffering without any glimmer of it. This study finds that using negative terms has extremely adverse effects on the parents’ emotions. Hence, although the mothers asked the doctors to be as honest as they could, they still wanted the physicians to provide them with a positive message by communicating this information in a sensitive manner including hope.

Keywords: health professionals, children, communication, hope, information, mothers, palliative care

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Authors: Maximo Cozzetti

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The aim is to evaluate the capability of the 'Siberian Husky' (FCI-Standard Nº 270) breed of the common dog (Canis lupus familiaris) to detect terminally-ill human patients undergoing palliative care. A total of 49 such patients that fulfill the 'National Scientific and Technical Research Council–Ethical Principles for the Behavior of the Scientific and Technical Investigator' policy, (mainly affected with Stage IV Hodgkin lymphoma or Stage IV Carcinoma, though various other terminal diseases were present) and 49 controls were enrolled. A total of 13 specimens of Siberian Huskies (Canis lupus familiaris FCI – Standard Nº 270) were selected. After a conditioning training regime in which the canines were rewarded when identifying terminally ill patients and excluding the control subjects, a double-blind experiment was conducted in which the canines were presented with a previously unknown patient through an olfactory-proof plexiglass window for 2-minute intervals. The test subjects correctly identified 89.80% of the humans as either ‘ill’ or ‘healthy’. It is important to note that both groups of humans were selected considering and preventing confounding and self-identifying factors such as age, ethnicity, clothing, posture, skin color, alopecia (chemotherapy-induced or otherwise), etc. The olfactory-proofing of the test area rules out the use of the sense of smell to detect distinctive drugs or bodily odors that may be associated with terminal diseases. Thus, the Siberian Husky breed of the common dog shows the visual capability to detect and identify terminally ill patients undergoing palliative care regardless of age, posture, and quantity of hair. Though the capability of the breed of dog to detect terminally-ill patients was observed thoroughly during the course of the experiments, the exact process by which the canines identify the test subjects remains unknown and further research is encouraged.

Keywords: Canis lupus familiaris, Siberian Husky, visual identification of terminall illness, FCI-Standard Nº270

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Authors: Radhika Jain

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The nursing community in India face unique challenges ranging from lack of adequate career progression, low social status attached to the profession, poor nurse-to-patient ratio leading to heavy workload resulting in stress and burnout, lack of general recognition and the responsibility of often having to deal with the ire of the patients and their families. This study explores how a combination of Playback Theatre and Expressive Arts could be used as a very powerful tool to understand the concerns, and consequently as a self-care tool to bring about the sense of well-being and emotional awareness for the nurses. For the purpose of this study, Playback Theatre was used as an entry tool to understand the thoughts, feelings and concerns. Playback theatre is a unique improvisational form of theatre developed by Jonathan Fox and Jo Salas in 1975, in which audience share their own stories from their lives and the performers play them back through a range of improv techniques such as metaphor, poetry, music and movement. Playback Theatre helped in first warming them up to the idea of sharing and then gave them the confidence of a safe space to collectively go deeper into their emotional experiences. As the next step, structured sessions of Expressive Arts were conducted with the same set of nurses, for them to work on the issues and concerns they have (and which they shared during the Playback performance). These sessions were to enable longer engagements as many of the concerns expressed were related to perceptions and beliefs that have been ingrained over a period of time and hence it needs a longer engagement to be worked on in detail. The Expressive Art sessions helped in this regard. Expressive arts therapy combines psychology and the creative process to promote emotional growth and healing. The study was conducted at two places: one a geriatric centre and the other, a palliative care centre. The study revealed that concerns and challenges would not be identical across the nursing community or across similar types of health care organizations but would be specific to each organization or centre as the circumstances and set-up at each place would be different. At the geriatric centre, stress and burnout emerged as the main concerns while at the palliative care centre, the main concern that came up was around the difficulty the nurses faced in expressing emotions and in communicating their feelings. The objective analysis of the results of the study indicated how longer-term engagements using Expressive Arts as the modality helped the nurses have better awareness of their emotions and helped them develop tools of self-care tools while also tapping into their emotions to express and experience. The process of eliciting the main concerns from the nurses using a Playback Theatre performance and then following that with subsequent sessions of expressive arts helped the nurses in the way nurses approached their job and the reduced level of overwhelm that they felt.

Keywords: palliative care, nurses, self-care, expressive arts, playback theatre

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Authors: Rosemary Saunders, Courtney Glass, Karla Seaman, Karen Gullick, Julie Andrew, Anne Wilkinson, Ashwini Davray

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Current literature demonstrates that most Australians receive end-of-life care in a hospital setting, despite most hoping to die within their own home. The necessity for high quality end-of-life care has been emphasised by the Australian Commission on Safety and Quality in Health Care and the National Safety and Quality in Health Services Standards depict the requirement for comprehensive care at the end of life (Action 5.20), reinforcing the obligation for continual organisational assessment to determine if these standards are suitably achieved. Limited research exploring clinical staff perspectives of end-of-life care delivery has been conducted within an Australian private health context. This study aimed to investigate clinical staff member perceptions of end-of-life care delivery at a private hospital in Western Australia. The study comprised of a multi-faceted mixed-methods methodology, part of a larger study. Data was obtained from clinical staff utilising surveys and focus groups. A total of 133 questionnaires were completed by clinical staff, including registered nurses (61.4%), enrolled nurses (22.7%), allied health professionals (9.9%), non-palliative care consultants (3.8%) and junior doctors (2.2%). A total of 14.7% of respondents were palliative care ward staff members. Additionally, seven staff focus groups were conducted with physicians (n=3), nurses (n=26) and allied health professionals including social workers (n=1), dietitians (n=2), physiotherapists (n=5) and speech pathologists (n=3). Key findings from the surveys highlighted that the majority of staff agreed it was part of their role to talk to doctors about the care of patients who they thought may be dying, and recognised the importance of communication, appropriate training and support for clinical staff to provide quality end-of-life care. Thematic analysis of the qualitative data generated three key themes: creating the setting which highlighted the importance of adequate resourcing and conducive physical environments for end-of-life care and to support staff and families; planning and care delivery which emphasised the necessity for collaboration between staff, families and patients to develop care plans and treatment directives; and collaborating in end-of-life care, with effective communication and teamwork leading to achievable care delivery expectations. These findings contribute to health professionals better understanding of end-of-life care provision and the importance of collaborating with patients and families in care delivery. It is crucial that health care providers implement strategies to overcome gaps in care, so quality end-of-life care is provided. Findings from this study have been translated into practice, with the development and implementation of resources, training opportunities, support networks and guidelines for the delivery of quality end-of-life care.

Keywords: clinical staff, end-of-life care, mixed-methods, private hospital.

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Authors: J. E. Appel, R. N. Bouwmeester, L. Crombach, K. Georgieva, N. O’Shea, T. I. van Rijssel, L. Wingens

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The Netherlands has a unique and progressive euthanasia law. Even people with advanced neurodegenerative diseases, like dementia, can request euthanasia when an Advanced Euthanasia Directive (AED) was written. Although the law sets some guidelines, in practice many complexities occur. Especially doctors experience difficult situations, as they have to decide whether euthanasia is justified. Research suggests that this leads to an emotional burden for them, due to feelings of isolation, fear of prosecution, as well as pressures from patient, family, or society. Existing literature, however, failed to address problems arising in dementia cases in particular, as well as possible sources of support. In order to investigate these issues, semi-structured in-depth interviews with 20 Dutch general practitioners and elderly care physicians will be conducted. Results are expected to be obtained by the end of December 2017.

Keywords: dementia, euthanasia, general practitioners, elderly care physicians, palliative care

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Authors: Kiran Datta, Daniella Holland-Hart, Anthony Byrne

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Introduction: Oesophago-gastric (OG) cancers are the fifth commonest in the UK, accounting for over 12,000 deaths each year. Most patients will present at later stages of the disease, with only 21% of patients with stage 4 disease surviving longer than a year. As a result, many patients are unsuitable for curative surgery and instead receive palliative treatment to improve prognosis and symptom burden. However, palliative chemotherapy can result in significant toxicity: almost half of the patients are unable to complete their chemotherapy regimen, with this proportion rising significantly in older and frailer patients. In addition, clinical trials often exclude older and frailer patients due to strict inclusion criteria, meaning there is limited evidence to guide which patients are most likely to benefit from palliative chemotherapy. Inappropriate chemotherapy administration is at odds with the goals of palliative treatment and care, which are to improve quality of life, and this also represents a significant resource expenditure. This literature review aimed to examine and appraise evidence regarding treatment resilience in order to guide clinicians in identifying the most suitable candidates for palliative chemotherapy. Factors influencing treatment resilience were assessed, as measured by completion rates, dose reductions, and toxicities. Methods: This literature review was conducted using rapid review methodology, utilising modified systematic methods. A literature search was performed across the MEDLINE, EMBASE, and Cochrane Library databases, with results limited to papers within the last 15 years and available in English. Key inclusion criteria included: 1) participants with either oesophageal, gastro-oesophageal junction, or gastric cancers; 2) patients treated with palliative chemotherapy; 3) available data evaluating the association between baseline participant characteristics and treatment resilience. Results: Of the 2326 papers returned, 11 reports of 10 studies were included in this review after excluding duplicates and irrelevant papers. Treatment resilience factors that were assessed included: age, performance status, frailty, inflammatory markers, and sarcopenia. Age was generally a poor predictor for how well patients would tolerate chemotherapy, while poor performance status was a better indicator of the need for dose reduction and treatment non-completion. Frailty was assessed across one cohort using multiple screening tools and was an effective marker of the risk of toxicity and the requirement for dose reduction. Inflammatory markers included lymphopenia and the Glasgow Prognostic Score, which assessed inflammation and hypoalbuminaemia. Although quick to obtain and interpret, these findings appeared less reliable due to the inclusion of patients treated with palliative radiotherapy. Sarcopenia and body composition were often associated with chemotherapy toxicity but not the rate of regimen completion. Conclusion: This review demonstrates that there are numerous measures that can estimate the ability of patients with oesophago-gastric cancer to tolerate palliative chemotherapy, and these should be incorporated into clinical assessments to promote personalised decision-making around treatment. Age should not be a barrier to receiving chemotherapy and older and frailer patients should be included in future clinical trials to better represent typical patients with oesophago-gastric cancers. Decisions regarding palliative treatment should be guided by these factors identified as well as patient preference.

Keywords: frailty, oesophago-gastric cancer, palliative chemotherapy, treatment resilience

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Authors: Sharon Jackson White

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Purpose: Nurse practitioners (NPs) practicing within hospital medicine play a significant role in caring for patients who might benefit from palliative care (PC) services. Using the Theory of Planned Behavior, the purpose of this study was to examine the relationships among facilitators to referral, barriers to referral, self-efficacy with end-of-life discussions, history of referral, and referring to PC among NPs in hospital medicine. Hypotheses: 1) Perceived facilitators to referral will be associated with a higher history of referral and a higher number of referrals to PC. 2) Perceived barriers to referral will be associated with a lower history of referral and a lower number of referrals to PC. 3) Increased self-efficacy with end-of-life discussions will be associated with a higher history of referral and a higher number of referrals to PC. 4) Perceived facilitators to referral, perceived barriers to referral, and self–efficacy with end-of-life discussions will contribute to a significant variance in the history of referral to PC. 5) Perceived facilitators to referral, perceived barriers to referral, and self–efficacy with end-of-life discussions will contribute to a significant variance in the number of referrals to PC. Significance: Previous studies of referring patients to PC within the hospital setting care have focused on physician practices. Identifying factors that influence NPs referring hospitalized patients to PC is essential to ensure that patients have access to these important services. This study incorporates the SNRS mission of advancing nursing research through the dissemination of research findings and the promotion of nursing science. Methods: A cross-sectional, predictive correlational study was conducted. History of referral to PC, facilitators to referring to PC, barriers to referring to PC, self-efficacy in end-of-life discussions, and referral to PC were measured using the PC referral case study survey, facilitators and barriers to PC referral survey, and self-assessment with end-of-life discussions survey. Data were analyzed descriptively and with Pearson’s Correlation, Spearman’s Rho, point-biserial correlation, multiple regression, logistic regression, Chi-Square test, and the Mann-Whitney U test. Results: Only one facilitator (PC team being helpful with establishing goals of care) was significantly associated with referral to PC. Three variables were statistically significant in relation to the history of referring to PC: “Inclined to refer: PC can help decrease the length of stay in hospital”, “Most inclined to refer: Patients with serious illnesses and/or poor prognoses”, and “Giving bad news to a patient or family member”. No predictor variables contributed a significant variance in the number of referrals to PC for all three case studies. There were no statistically significant results showing a relationship between the history of referral and referral to PC. All five hypotheses were partially supported. Discussion: Findings from this study emphasize the need for further research on NPs who work in hospital settings and what factors influence their behaviors of referring to PC. Since there is an increase in NPs practicing within hospital settings, future studies should use a larger sample size and incorporate hospital medicine NPs and other types of NPs that work in hospitals.

Keywords: palliative care, nurse practitioners, hospital medicine, referral

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Authors: Tomohiro Uchida, Noriaki Satake, Toshimichi Nakaho, Akira Inoue, Hidemitsu Saito

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In this study, we assessed the bereavement risk of family caregivers of patients with cancer. In the palliative care unit of Tohoku University Hospital, we conducted a family psychoeducation session to support the family caregivers of patients with cancer. A total of 50 participants (8 males and 42 females; mean age = 62.98 years, SD = 11.10) were assessed after the session for bereavement risk using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). According to the BRAT-J scores, eight participants were considered to be having no known risk (Level 1), seventeen had minimal risk (Level 2), twenty had a low risk (Level 3), four had a moderate risk (Level 4), and one had a high risk (Level 5). Of these participants, seven participants had completed the follow-up postal survey that assessed their psychological distress (the Kessler Psychological Distress Scale: K6) to compare the bereavement risk. According to the K6 scores, three-fourth of the individuals, who were considered to be at Level 3 on the BRAT-J, scored higher than the cutoff point (>10) for the detection of depressive disorder. On the other hand, one-third of the individuals, who were considered to be at Level 2 on the BRAT-J, scored higher than the cutoff point. Therefore, it appears that the BRAT-J can predict the likelihood of difficulties or complications in bereaved family caregivers. This research was approved by the Ethics Committee of Tohoku University Graduate School of Medicine and Tohoku University Hospital.

Keywords: palliative care, family caregivers, bereavement risk, BRAT, post-loss psychological distress

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Authors: Emni Omar Daw Hussin, Pathmawathi Subramanian, Wong Li Ping

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Background: To provide quality care at the end of life, nurses should possess knowledge and skills to provide effective end-of-life care, as well as develop the attitudes and interpersonal competence to provide compassionate care. Aim: This study aimed to assess nurses’ knowledge and attitude towards end of life care and caring for terminal ill patients and to examine relationships among demographic variables and nurse’s knowledge and attitudes toward end of life care and caring for terminal ill patients. Method: a cross-sectional study was conducted at 1 tertiary hospital located in Kuala Lumpur, Malaysia. Self-administrative questionnaire was used to collect data from 553 nurses from over all departments except emergency department, operation theater and outpatient clinic. Two tools were used in this study, the Frommelt’s Attitude Toward Care of the Dying (FATCOD) Scale to assess the nurses’ attitude and End of Life Knowledge Assessment to assess the nurses’ knowledge. Result: the result of this study yielded that, the majority of participants (54.8%) and (54.4%) have less positive attitude and knowledge towards end of life care and caring for terminal ill patients respectively. As well as there is no significant relationship were found between nurses’ ethnicity, religion, and the total score of FATCOD scale; End of Life Knowledge Assessment score. On other hand there is significant relationship among nurses’ age, working experience, level of education, attending any post basic courses and the total score of both FATCOD scale and End of Life Knowledge Assessment. Conclusion: A lack of education and experience and post basic course about end of life care and palliative care may contribute to the negative attitudes and poor knowledge regarding end of life care. Providing sufficient courses about end of life care could enhance the nurses’ knowledge towards end of life care, as well as providing a reflective narrative environment in which nurses can express their personal feelings about death and dying could be a potentially effective approach. Implication for Practice: This study elaborates the need for further research to develop an effective educational programs to enhance nurses’ knowledge and to promote positive attitude towards death and dying, as well as enhance communication skills, and coping strategies.

Keywords: knowledge, attitude, nurse, end of life care

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Authors: Ru-Yu Lien, Shih-Hsin Hung, Shu-Fen Lu, Ju-Jen Shie, Wen-Ju Yang, Yuann-Meei Tzeng, Chien-Ying Wang

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Background: The quality of care in intensive care units (ICUs) is crucial, especially for terminally ill patients. Shared decision-making (SDM) with families is essential to ensure appropriate care and reduce suffering. Aim: This study explores the effectiveness of an end-of-life decision support Patient Decision Aid (PDA) in an ICU setting. Methods: This study employed a cross-sectional research design conducted in an ICU from August 2020 to June 2023. Participants included family members of end-of-life patients aged 20 or older. A total of 319 participants. Family members of end-of-life patients received the PDA, and data were collected after they made medical decisions. Data collection involved providing family members with a PDA during family meetings. A post-PDA questionnaire with 17 questions assessed PDA effectiveness and anxiety levels. Statistical analysis was performed using SPSS 22.0. Results: The PDA significantly reduced anxiety levels among family members (p < 0.001). It helped them organize their thoughts, prepare for discussions with doctors, and understand critical decision factors. Most importantly, it influenced decision outcomes, with a shift towards palliative care and withdrawal of life-sustaining treatment. Conclusion: This study highlights the importance of family-centered end-of-life care in ICUs. PDAs promote informed decision-making, reduce conflicts, and enhance patient and family involvement. These tools align patient values and goals with medical recommendations, ultimately leading to decisions that prioritize comfort and quality of life. Implementing PDAs in healthcare systems can ensure that patients' care aligns with their values.

Keywords: shared decision-making, patient decision aid, end-of-life care, intensive care unit, family-centered care

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Authors: Puneet Goyal, Aarti Agarwal

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Background and Objective: Nutritional support is an integral part of palliative care of advanced non-resectable abdominal malignancy patients, though is frequently neglected aspect. Non-Healing high output Entero-cutaneous fistulas sometimes require long term parenteral nutrition, to take care of catabolism and replacement of nutrients. We present a case of inoperable pancreatic malignancy with high output entero-cutaneous fistula, which was provided parenteral nutritional support with the use of Totally Implantable Venous Access Device (TIVAD). Method and Results: 55 year old man diagnosed with carcinoma pancreas had developed high entero-cutaneous fistula. His tumor was found to be inoperable and was on total parenteral nutrition through routine central line. This line was difficult to maintain as he required it for a long term TPN. He was planned to undergo Totally Implantable Venous Access Device (TIVAD) implantation. 8Fr single lumen catheter with Groshong non-return Valve (Bard Access Systems, Inc. USA) was inserted through right internal jugular vein, under fluoroscopic guidance. The catheter was tunneled subcutaneously and brought towards infraclavicular pocket, cut at appropriate length and connected to port and locked. Port was sutured in floor of pocket. Free flow of blood aspirated, flushed with heparinized saline. There was no kink observed in entire length of catheter under fluoroscopy. Skin over infraclavicular pocket was sutured. Long term catheter care and associated risks were explained to patient and relatives. Patient continued to receive total parenteral nutrition as well as other supportive therapy though TIVAD for next 6 weeks, till his demise. Conclusion: TIVADs are standard of care for long term venous access solutions in cancer patients requiring chemotherapy. In this case, we extended its use for providing parenteral nutrition and other supportive therapy. TIVADs can be implanted in advanced cancer patients for providing venous access solution required for various palliative treatments and medications. This will help in improving quality of life and satisfaction amongst terminally ill cancer patients.

Keywords: parenteral nutrition, totally implantable venous access device, long term venous access, interventions in anesthesiology

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Authors: Kathryn L. Duncan, Charles A. Kuntz, Alessandra C. Santamaria, James O. Simcock

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Access to megavoltage radiation therapy for small animals is limited in many locations around the world. This can preclude the use of palliative radiation therapy for the treatment of appendicular osteosarcoma in dogs. The objective of this study was to retrospectively assess the adverse effects and survival times of dogs with appendicular osteosarcoma that were treated with hypofractionated orthovoltage radiation therapy and adjunctive carboplatin chemotherapy administered via a single subcutaneous infusion. Medical records were reviewed retrospectively to identify client-owned dogs with spontaneously occurring appendicular osteosarcoma that was treated with palliative orthovoltage radiation therapy and a single subcutaneous infusion of carboplatin. Data recorded included signalment, tumour location, results of diagnostic imaging, haematologic and serum biochemical analyses, adverse effects of radiation therapy and chemotherapy, and survival times. Kaplan-Meier survival analysis was performed, and log-rank analysis was used to determine the impact of specific patient variables on survival time. Twenty-three dogs were identified that met the inclusion criteria. Median survival time for dogs was 182 days. Eleven dogs had adverse haematologic effects, 3 had adverse gastrointestinal effects, 6 had adverse effects at the radiation site and 7 developed infections at the carboplatin infusion site. No statistically significant differences were identified in survival times based on sex, tumour location, development of infection, or pretreatment serum alkaline phosphatase. Median survival time and incidence of adverse effects were comparable to those previously reported in dogs undergoing palliative radiation therapy with megavoltage or cobalt radiation sources and conventional intravenous carboplatin chemotherapy. The use of orthovoltage palliative radiation therapy may be a reasonable alternative to megavoltage radiation in locations where access is limited.

Keywords: radiotherapy, veterinary oncology, chemotherapy, osteosarcoma

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Authors: Chick Loveline Ayoh Epse Ndi

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Our cultural stance has deep implications for the psychological and physical well-being of the old. Cameroon is still rooted on the traditional belief that stipulates that; the aged are best catered for in the family setting where the children and grandchildren are supposed to give in return for services invested on them by the former. This is why up till date, there are no “Rest Homes” or “Convalescent hospitals” despite the rising challenges faced by the aged in this context. Beside the special measure set aside to cater for the aged, such as “Rest Homes” for the healthy, “Convalescent hospitals” are created set to cater for the health of the aged in the Western context with other facilities such as geriatric units. The health care practitioners are aware of aging diseases and have trained human resources like Gerontologists to cater for the aged and aging diseases. Meanwhile, in Africa and Cameroon in particular, such infrastructural and human resources are still to be considered in the health care system. It can be assumed that the aged and aging diseases are still to be considered in the health care system in this context. This is why we talk of therapeutic nihilism, where the aged are mixed up with other categories of patients with no special attention given to them. This qualitative study carried out in the Yaounde, the capital city of Cameroon, with their best referent hospitals, reveal that; the aged and aging diseases are still a myth in this context. Data collected in both private and public health institutions show that there is only one public institution in Cameroon that has a geriatric unit with no specialists. Patients who aretreated in this unit are considered as aged with terminal diseases that need palliative care and not intensive care. Cameroon is still lacking in terms of health care to the aged and ageing diseases. Like other patients, the aged are treated with a lot of laxity and no value. There is an emergency to create special health care units for geriatrics and and train gerontologist. Mentally or physically ill aged faced medical rational with psychodynamic treatment considered as waste of time. The aged are less likely to be regarded salvageable when they enter a hospital in serious conditions due to the lack of specialists and geriatric units for them. The implication of this study is to sensitization the stake holders for an urgent need to extend special care units for the aged and aging diseases in this context.

Keywords: challeng, therapy, agtng, diseases cameroon

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Authors: Chuang-Chun Chiou

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Ageing population is a global trend; therefore the need of care service has been increasing dramatically. There are three basic forms of service delivered to the elderly: institution, community, and home. Particularly, the institutional service can be seen as an extension of medical service. The nursing home or so-called care home which is equipped with professional staff and facilities can provide a variety of service including rehabilitation service, short-term care, and long term care. Similar to hospital and other health care service, care home service do need to provide quality and cost-effective service to satisfy the dwellers. The main purpose of this paper is to show how lean thinking and service innovation can be applied to care home operation. The issues and key factors of implementing lean practice are discussed.

Keywords: lean, service improvement, SERVQUAL, care home service

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Authors: Fatemeh Soltani, Simindokht Shirvani Arani, Ali Bahrami Samani, Mahdi Sadeghi, Kamal Yavari

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Cerium-141 [T1/2 = 32.501 days, Eβ (max) = 0.580 (29.8%) and 0.435(70.2%) MeV, Eγ=145.44 (48.2%) keV] possesses radionuclidic properties suitable for use in palliative therapy of bone metastases. 141Ce also has gamma energy of 145.44 keV, which resembles that of 99mTc. Therefore, the energy window is adjustable on the Tc-99m energy because of imaging studies. 141Ce can be produced through a relatively easy route that involves thermal neutron bombardment on natural CeO2 in medium flux research reactors (4–5×1013 neutrons/cm2•s). The requirement for an enriched target does not arise. Ethylenediamine tetramethylene phosphonic acid (EDTMP) was synthesized and radiolabeled with 141Ce. Complexation parameters were optimized to achieve maximum yields (>99%). The radiochemical purity of 141Ce-EDTMP was evaluated by radio-thin layer chromatography. The stability of the prepared formulation was monitored for one week at room temperature, and results showed that the preparation was stable during this period (>99%). Biodistribution studies of the complexes carried out in wild-type rats exhibited significant bone uptake with rapid clearance from blood. The properties of produced 141Ce-EDTMP suggest applying a new efficient bone pain palliative therapeutic agent to overcome metastatic bone pains.

Keywords: bone pain palliative, cerium-141, EDTMP, radiopharmaceutical

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Authors: T. Turan, Ç. Erdoğan

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As far as is known, general nursing care practices do not include specific evidence-based practices related to oral care in children. This study aimed to evaluate the evidence based nursing practice for oral care in children. This article is planned as a review article by searching the literature in this field. According to all age groups and the oral care in various specific situations located evidence in the literature were examined. It has been determined that the methods and frequency used in oral care practices performed by nurses in clinics differ from one hospital to another. In addition, it is seen that different solutions are used in basic oral care, oral care practices to prevent ventilator-associated pneumonia and evidence-based practice in mucositis management in children. As a result, a standard should be established in oral care practices for children and education for children is recommended.

Keywords: evidence-based practice, oral care, nursing, children

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Authors: Szu Mei Hsiao

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This study explores the spiritual needs of inpatients with advanced cancer and their family caregivers in one southern regional teaching hospital in Taiwan and elucidates the differences and similarities of spiritual needs between them. Little research reports the different phases of spiritual needs and the potential impact of Chinese cultural values on the spiritual needs. Qualitative inquiry was used. Twenty-one patients with advanced cancer and twenty-two family caregivers were recruited. During hospitalization, all participants identified spiritual needs both the palliative phase and the dying phase: (a) the need to foster faith/confidence and hope for medicine and/or God; (b) to understand the meaning and values of life; (c) to experience more reciprocal human love and forgiveness; and (d) to obey God’s/Heaven will. Furthermore, the differences of spiritual needs between patients with advanced cancer and their family caregivers are as follows: (a) family caregivers emphasized the need to inform relatives and say goodbye in order to die peacefully; (b) patients highlighted a need to maintain a certain physical appearance in order to preserve their dignity; nurture one’s willpower; learn about the experiences of cancer survivors; and identify one’s own life experience for understanding the meaning and values of life. Moreover, the dissimilarity of spiritual needs is that the patients pointed out the need to understand God’s will during the palliative treatment phase. However, the family caregivers identified the need to forgive each other, and inform relatives and say goodbye to patients in the dying phase. This research has shown that the needs of meaning/values of life and facing death peacefully are different between two groups. Health professionals will be encouraged to detect and to develop individualized care strategies to meet spiritual needs.

Keywords: advanced cancer, Chinese culture, family caregivers, qualitative research, spiritual needs

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Authors: Hazel S. Cometa-Lamberte

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This paper presents the residential care workers reflections in working with children who were under protective custody and placed in a residential care facility for children. Key informant interviews and focus group discussion were employed in this study to analyze the views of residential care workers on the programs and services and case management system in residential care for children. Results suggest that working in a residential care facility for children needs the interplay of both the worker’s personal and professional values, knowledge and skills in working with children. Analyzing the residential care workers experiences in handling children in residential care facilities is vital for the improvement of the policies, programs and services, the repertoire of techniques and facilitate the creation of a new social work practice framework/model in child protection specifically in residential care facilities.

Keywords: child protection, residential care, residential care workers, social workers

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Authors: Eduard Fosch-Villaronga

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This paper pioneers Care Robot Impact Assessment (CRIA), a methodology used to identify, analyze, mitigate and eliminate the risks posed by the insertion of non-medical personal care robots (PCR) in medical care facilities. Its precedent instruments (Privacy and Surveillance Impact Assessment (PIA and SIA)) fall behind in coping with robots. Indeed, personal care robots change dramatically how care is delivered. The paper presents a specific risk-sector methodology, identifies which robots are under its scope and presents some of the challenges introduced by these robots.

Keywords: ethics, impact assessment, law, personal care robots

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Authors: Sharmistha Mukherjee

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Health care is the basic requirement for all. The prime question is who gets what, where and how? The unequal distribution of basic facilities do have a adverse effect on the users. The paper tries to examine health care in terms of available facilities, the health care need and how people perceive to it in a small town of Jalpaiguri in the midst of tea gardens in North Bengal. The morbidity pattern is also minutely observed with a section describing the organizational structure of health care keeping in mind the utilization.

Keywords: availability, distribution, health care, utilization

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Authors: Julius Lenaerts, Ahmed Elsaadawy, Mohammed Bashir

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Background Sedated and paralyzed patients have an impaired blink reflex leading to ophthalmic complications such as conjunctivitis, epithelial defects, bacterial keratitis, and more. These are entirely preventable complications through regular eye care. Methods Patients at level 3 or above (intubated/paralyzed) care in the Intensive Care Unit (ICU) were reviewed between February and April. Data was pulled from Metavision and adherence was compared to Royal College of Ophthalmology (RCOphth) recommendations[4]. Using a multi-pronged approach through posters, individual teaching sessions and faculty teaching, we aimed to educate staff about eye care in the ICU. Patients were reaudited in the period July to August. Results Out of 40 patients, only 23% were assessed for eye care needs on admission compared to 77% after teaching; eye care was only delivered 59% of the time it was due, compared to 61%; 2.5% of patients had eyedrops prescribed compared to 41%. This shows an overall increase in meeting RCOphth standards. Key messages Eye care is an overlooked aspect of patient care in the ICU, associated with avoidable ocular complications. Healthcare staff need further rigorous education on the provision and importance of eye care to reduce avoidable complications.

Keywords: ICU, eye care, risk, QIP

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Authors: Evangelia Kotrotsiou, Mairy Gouva, Theodosios Paralikas, Maria Fiaka, Styliani Kotrotsiou, Maria Malliarou

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The purpose of this research is to investigate the way nurses perceive the care provided in comparison to the way patients perceive it, taking into account existing literature. As far as the sample of research is concerned, it has come from the population of nurses working in the General Hospital of Thessaloniki, St. Paul and the patients of its surgical clinic. In the present study, the sample consists of 100 nurses and 88 patients. The questionnaire used was the Caring Nurse-Patient Interactions Scale: 23-Item Version, created by Cossette et al. (2006). In the case of both patients and nurses, a high score was observed in relational care in the case of the frequency of nursing care in daily practice, as well as the satisfaction of providing nursing care. Overall, patients rated higher clinical care in the case of the frequency of nursing care in daily practice, as well as the satisfaction of the clinical care they were given. On the other hand, nurses rated higher comfort care in the case of the frequency of nursing care in everyday practice, as well as relational care in the area of the importance of nursing care in everyday practice.

Keywords: nursing care, patient needs, patient satisfaction, care giving

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Authors: Sayna Bahraini, Wendy Gifford, Ian Graham, Liquaa Wazni, Suzettee Bremault-Phillips, Rebekah Hackbusch, Catrine Demers, Mary Egan

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Objective: Guidelines for palliative and spiritual care emphasize the importance of screening patients for spiritual suffering. The aim of this review was to synthesize the research evidence on the accuracy of measures used to screen adults for spiritual suffering. Methods: A systematic review has been conducted. We searched five scientific databases to identify relevant articles. Two independent reviewers screened extracted data and assessed study methodological quality. Results: We identified five articles that yielded information on 24 spiritual screening measures. Among all identified measures, the 2-item Meaning/Joy & Self-Described Struggle has the highest sensitivity (82-87%), and the revised Rush protocol has the highest specificity (81-90%). The methodological quality of all included studies was low. Significance of Results: While most of the identified spiritual screening measures are brief (comprise 1 to 12 number of items), few have sufficient accuracy to effectively screen patients for spiritual suffering. We advise clinicians to use their critical appraisal skills and clinical judgment when selecting and using any of the identified measures to screen for spiritual suffering.

Keywords: screening, suffering, spirituality, diagnostic test accuracy, systematic review

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Authors: Rasikha Ramanand, Priyanka Dixit

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Background: Continuum of maternal care which includes antenatal care, delivery care and postnatal care aids in averting maternal deaths. The objective of this paper is to identify the association between previous experiences of child death on Continuum of Care (CoC) of recent child. Further, the study aimed at understanding where the drop-out rate was high in the continuum. Methods: The study was based on the Nation-wide District Level Household and Facility Survey (DLHS-4) conducted during 2012-13, which provides information on antenatal care, delivery care, percentage of women who received JSY benefits, percentage of women who had any pregnancy, delivery, the place of delivery etc. The sample included women who were selected from the non-EAG states who delivered at least two children. The data were analyzed using SPSS 20.Binary Logistic regression was applied to the data in which the Continuum of Care (CoC) was the dependent variable while the independent variables were entered as the covariates. Results: A major finding of the study was the antenatal to delivery care period where the drop-out rates were high. Also, it was found that a large proportion of women did not receive any of the services along the continuum. Conclusions: This study has clearly established the relationship between previous history of child loss and continuum of maternal care.

Keywords: antenatal care, continuum of care, child loss, delivery care, India, maternal health care, postnatal care

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Authors: Mohammad Ansari, Ahmed Ismail, Satinder Mann

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Overcrowding in Emergency departments (ED) of United Kingdom has become a common problem. Urgent Care centres were developed nearly a decade ago to reduce pressure on EDs. Unfortunately, the development of Urgent Care centres has failed to produce the projected effects. It was thought that nearly 40% patients attending ED would go to Urgent Care centres and these would be staffed by Primary care Physicians. Data reveals that no more than 20% patients were seen by Primary Care Physicians even when the Urgent Care Centre was based in the ED. This study was carried out at the ED of George Eliot Hospital, Nuneaton, UK where the Urgent Care centre was based in the ED and employed Primary Care Physicians with special interest in trauma for nearly one year. This was then followed by a Primary Care Physician and Advanced Nurse Practitioner. We compared the number of patients seen during these periods and the cost-effectiveness of the service.We randomly selected a week of patients seen by Primary Care Physicians with special interest in Trauma and by Primary Care Physicians and the Advanced Nurse Practitioner. We compared the number and type of patients seen during these two periods. Nearly 38% patients were seen by Primary care Physician with special interest in Trauma, whilst only 14.3% patients were seen by the Primary care Physician and Advanced Nurse Practitioner. The Primary Care Physicians with special interest in trauma were paid less. Our study confirmed that unless Primary Care Physicians are able to treat minor trauma and interpret x-rays, the urgent care service is not going to be cost effective. Numerous previous studies have shown that 15 to 20% patients attending ED can be treated by Primary Care Physicians who do not require any investigations for their management. It is advantageous to have Urgent Care Centres within the ED because if the patient deteriorates they can be transferred to ED. We recommend that the Urgent care Centres should be a part of ED. Our study shows that Urgent care Centres in the ED can be helpful and cost effective if staffed by either senior Emergency Physicians or Primary Care Physicians with special interest and experience in the management of minor trauma.

Keywords: urgent care centres, primary care physician, advanced nurse practitioner, trauma

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