Search results for: end of life care

Authors: Shedy Maharani Nariswari, Prima Agustia Nova, I. Made Kariasa

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Background. Heart Failure (HF) is a chronic and progressive condition associated with significant morbidity, mortality, health care expenditures, and a high readmission rate over the years. Self‐care is essential to manage chronic heart failure in the long term, and it is related to better outcomes and can enhance the quality of life. Objective. The aims of this study were to describe the relationship between self-care behavior and quality of life among heart failure patients in East Jakarta, Indonesia. Methods. This study used a correlational-descriptive design with a cross-sectional study, the sampling method used purposive sampling method. Self-care was measured using Self-care Heart Failure Index version 6.2, and quality of life was measured using The Minnesota Living with Heart Failure. Pearson correlation and Spearman-rho correlations are used to analyze the data. Results. We recruited 103 patients with HF in both outpatient and inpatient ward: mean age 59.26 ± 11.643 years, 63.1% male. Patients with higher levels of education were associated with higher self-care maintenance (p= 0.007). The patient's average quality of life is quite high, with a score of 72,07 ± 16,89. There were a significant relationship among self-care maintenance (r=0,305, p=0,001), self-care management (r=0,330, p=0,001), and self-care confidence (r=0,335, p=0,001) towards the quality of life. Most participants have inadequate self-care maintenance, self-care management, and self-care confidence (score < 70), while the score of quality of life is categorized as poor. Conclusion. The self-care behaviors were limited among patients living with HF in Indonesia yet was associated with better quality of life. It is necessary to promote health related to knowledge and adherence to self-care behavior so that it can improve the quality of life of heart failure patients. This study can be used as a reference to promote self-care among patients with heart failure, it can help to enhance their quality of life.

Keywords: heart failure, self-care maintenance, self-care management, self-care confidence, quality of life

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Authors: Shang-Sin Shiu, Shu-I Chin, Hsiu-Ju Chen, Ru-Yu Lien

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The Hospice and Palliative Care Act has undergone three revisions, making it less challenging for terminal patients to withdraw life support systems. However, the adequacy of care before withdraw is a crucial factor in end-of-life medical treatment. The author observed that intensive care unit (ICU) nursing staff often rely on simple flowcharts or word of mouth, leading to inadequate preparation and failure to meet patient needs before withdraw. This results in confusion or hesitation among those executing the process. Therefore, there is a motivation to improve the withdraw of patient care processes, establish standardized procedures, ensure the accuracy of removal execution, enhance end-of-life care self-efficacy for nursing staff, and improve the overall quality of care. The investigation identified key issues: the lack of applicable guidelines for ICU care for withdraw from life-sustaining, insufficient education and training on withdraw and end-of-life care, scattered locations of withdraw-related tools, and inadequate self-efficacy in withdraw from life-sustaining care. Solutions proposed include revising withdraw care processes and guidelines, integrating tools and locations, conducting educational courses, and forming support groups. After the project implementation, the accuracy of removal cognition improved from 78% to 96.5%, self-efficacy in end-of-life care after removal increased from 54.7% to 93.1%, and the correctness of care behavior progressed from 27.7% to 97.8%. It is recommended to regularly conduct courses on removing life support system care and grief consolation to enhance the quality of end-of-life care.

Keywords: the intensive care unit (ICU) patients, nursing staff, withdraw life support systems, self-efficacy

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Authors: Sonia Mannan, M. Jobair Alam

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The concept of palliative care in Bangladesh largely remained limited to the sympathetic caring of patients with a life-limiting illness. Quality of Life (QoL) issues are rarely practiced in Bangladesh. Furthermore, palliative medicine, in the perspective of holistic palliative care service, does not have its proper recognition in Bangladesh. Apart from those socio-medical aspects, palliative care patients face legal issues that impact their quality of life, including access to health services and social benefits and dealing with other life-transactions of the patients and their families (such as disposing of property; planning for children). This paper is an attempt to articulate these legal dimensions of the right to palliative care in the context of Bangladesh. The major focus of this paper will be founded on the doctrinal analysis of the constitutional provisions and other relevant legislation on the right to health and their judicial interpretation, which is argued to offer a meaningful space for the right to palliative care. This paper will also investigate the gaps in the said legal framework to better secure such care. In conclusion, a few recommendations are made so that the palliative care practices in Bangladesh are better aligned with international standards, and it can respond more humanely to the patients who need palliative care.

Keywords: Bangladesh, constitution, legal regime, palliative care, quality of life

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Authors: Elena Ivany, Leanne Aitken

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Little is known about the delivery of end-of-life care in cardiac intensive care unit (CICU) settings. The aims of this study were to highlight the nurse-identified barriers and facilitators to delivering end-of-life care in the CICU, and to identify whether any of the barriers and/or facilitators are specific to the CICU setting. This was an exploratory qualitative study utilizing semi-structured individual interviews as the data collection method and inductive thematic analysis to structure the data. Six CICU nurses took part in the study. Five key themes were identified, each theme including both barriers and facilitators. The five key themes are as follows: patient-centered care, emotional challenges, reaching concordance, nursing contribution and the surgical intensive care unit.

Keywords: end-of-life, cardiovascular disease, cardiac surgery, critical care

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Authors: Tina Abrefa-Gyan

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Background: In Ghana and the rest of sub-Saharan Africa, HIV/AIDS is a public health threat and also causes medical crises for many who are infected with the virus. Objective: This study tested a social care intervention developed to help improve the quality of life of those living with HIV/AIDS in Ghana. Method: Adult respondents (N = 248) were assigned to receive the intervention or usual care for six weeks. Results: Results of the study revealed significant differences between the treatment and control groups in their reports of quality of life. Respondents reported better quality of life upon receiving the intervention. Implication: This study sheds light on the positive relationship between the intervention and quality of life among those living with HIV/AIDS in Ghana. Conclusion: The intervention is innovative and novel in the setting. It will, therefore, help to reduce the risks such as depression, low cognitive functioning, and low physical functioning associated with low quality of life among people living with HIV/AIDS in Ghana in specific, and in sub-Saharan Africa in general.

Keywords: social care intervention, HIV/AIDS, Ghana, quality of life

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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: Adesola C. Odole, Michael O. Ogunlana, Nse A. Odunaiya, Olufemi O. Oyewole, Chidozie E. Mbada, Ogochukwu K. Onyeso, Ayomikun F. Ayodeji, Opeyemi M. Adegoke, Iyanuoluwa Odole, Comfort T. Sanuade, Moyosooreoluwa E. Odole, Oluwagbohunmi A. Awosoga

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Purpose: The Nigerian healthcare industry is bedeviled with infrastructural decay, inadequate funding and staffing, and a dysfunctional healthcare system. This study investigated the influence of health professionals’ well-being and quality of work-life (QoWL) on the quality of care (QoC) of patients in Nigeria. Methods: The study was a multicentre cross-sectional survey conducted at four tertiary health institutions in southwest Nigeria. Participants’ demographic information, well-being, quality of work-life, and quality of care were obtained using four standardized questionnaires. Data were summarized using descriptive statistics of frequency (percentage) and mean (standard deviation). Inferential statistics included Chi-square, Pearson’s correlation, and independent samples t-test analyses. Results: Medical practitioners (n=609) and nurses (n=570) constituted 74.6% of all the health professionals, with physiotherapists, pharmacists, and medical laboratory scientists constituting 25.4%. The mean (SD) participants’ well-being = 71.65% (14.65), quality of life = 61.8% (21.31), quality of work-life = 65.73% (10.52) and quality of care = 70.14% (12.77). Participants’ quality of life had a significant negative correlation with the quality of care, while well-being and quality of work-life had a significant positive correlation with the quality of care. Conclusion: We concluded that health professionals’ well-being and quality of work-life are important factors that influence their productivity and, ultimately, the quality of care rendered to patients. The hospital management and policymakers should ensure improved work-related factors to improve the well-being of health professionals. This will enhance the quality of care given to patients and ultimately reduce brain drain and medical tourism.

Keywords: health professionals, quality of care, quality of life, quality of work-life, well-being

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Authors: Kenneth Larsen, Astrid Aasland, Synnve Schjølberg, Trond Diseth

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Autism Spectrum Disorders (ASD) are neurodevelopmental disorders emerging in early development characterized by impairment in social communication skills and a restricted, repetitive and stereotyped patterns of behavior and interests. Early identification and interventions potentially improve development and quality of life of children with ASD. Symptoms of ASD are apparent through the second year of life, yet diagnostic age are still around 4 years of age. This study explored whether symptoms associated with ASD are possible to identify in typical Norwegian day-care centers in the second year of life. Results of this study clearly indicates that most described symptoms also are identifiable by day-care staff, and that a short observation list of 5 symptoms clearly identify children with ASD from a sample of normal developing peers.

Keywords: autism, early identification, day-care, screening

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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: 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: 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: Jin Hun Choi, So Hyun Ahn, Seong Keun Wang, Ik-Seung Chee, Jung Lan Kim, Sun Woo Lee

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Objectives: The purpose of the study is to investigate the effects of day hospital care in hospitalized schizophrenic patients in terms of treatment adherence and treatment outcomes. Methods: Among schizophrenic patients hospitalized between 2011 and 2012, 23 day hospital care patient and 40 control subjects were included in the study. All candidates underwent Beck Cognitive Insight Scale, Drug Attitude Inventory, World Health Organization Quality of Life Assessment and Psychological Well-Being Scale when their symptoms were stabilized during hospitalization, and after being discharged, 23 patients received day hospital care for two months and then changed to out-patient care while 40 patients received out-patient care immediately after discharge. At the point of two months of out-patient care, the treatment adherence of the two groups was evaluated; tracking observation was performed until February, 2013, and survival rates were compared between the two groups. Results: Treatment adherence was higher in the day hospital care group than in the control group. Kaplan-Meier survival analysis showed a higher survival rate for the day hospital care group compared to the control group. Levels of cognitive insight and quality of life were higher after day hospital care than before day hospital care in the day hospital care group. Conclusions: Through the study, it was confirmed that when hospitalized schizophrenic patients received continuous day hospital care after being discharged, they received further out-patient care more faithfully. The study is considered to aid in the understanding regarding schizophrenic patients’ treatment adherence issues and improvement of treatment outcomes.

Keywords: schizophrenia, day hospital care, adherence, outcomes

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Authors: Hennie Boeije, Renate Verkaik, Joke Korevaar

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In Dutch national policy, it is promoted that the elderly remain living at home longer. They are less often admitted to a nursing home or only later in life. While living at home, it is important that they experience a good quality of life. Care providers in primary care support this. In this study, it was investigated what quality of life means for the elderly and which characteristics care should have that supports living at home longer with quality of life. To explore this topic, a qualitative methodology was used. Four focus groups were conducted: two with elderly people who live at home and their family caregivers, one with district nurses employed in-home care services and one with elderly care physicians working in primary care. Next to this individual interviews were employed with general practitioners (GPs). In total 32 participants took part in the study. The data were thematically analysed with MaxQDA software for qualitative analysis and reported. Quality of life is a multi-faceted term for elderly. The essence of their description is that they can still undertake activities that matter to them. Good physical health, mental well-being and social connections enable them to do this. Own control over their life is important for some. They are of opinion that how they experience life and manage old age is related to their resilience and coping. Key terms in the definitions of quality of life by GPs are also physical and mental health and social contacts. These are the three pillars. Next, to this elderly care, physicians mention security and safety and district nurses add control over their own life and meaningful daily activities. They agree that with frail elderly people, the balance is delicate and a change in one of the three pillars can cause it to collapse like a house of cards. When discussing what support is needed, professionals agree on access to care with a low threshold, prevention, and life course planning. When care is provided in a timely manner, a worsening of the situation can be prevented. They agree that hospital care often is not needed since most of the problems with the elderly have to do with care and security rather than with a cure per se. GPs can consult elderly care physicians to lower their workload and to bring in specific knowledge. District nurses often signal changes in the situation of the elderly. According to them, the elderly predominantly need someone to watch over them and provide them with a feeling of security. Life course planning and advance care planning can contribute to uniform treatment in line with older adults’ wishes. In conclusion, all stakeholders, including elderly persons, agree on what entails quality of life and the quality of care that is needed to support that. A future challenge is to shape conditions for the right skill mix of professionals, cooperation between the professions and breaking down differences in financing and supply. For the elderly, the challenge is preparing for aging.

Keywords: elderly living at home, quality of life, quality of care, professional cooperation, life course planning, advance care planning

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Authors: Poonam Goswami

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Background: The diagnosis of a serious illness like cancer can have an impact on a patient’s emotional well-being and may result in psychological symptoms, anxiety, depression, and loss of control. Advance care planning discussions ensure patients’ values and goals of care, including patients’ freedom to choose their place of death, are respected. Unfortunately, these discussions are often delayed and are not initiated early in patients’ cancer trajectory. As a result, patients’ wishes often remains unknown until the last phase of their life. Evidence suggests that many patients inappropriately receive aggressive treatment near the end of life, which does lead to higher resource utilization, decreased quality of life, and increased cost. Additionally, the novel coronavirus disease 2019 (COVID-19) pandemic challenged the health care systems worldwide and raised important ethical issues, especially regarding the potential need for rationing health care in the context of scarce resources and crisis capacity. The importance of goal concordant care is now even substantially important and is heightened in the context of this pandemic. Problem: Although there is growing evidence on the effects of the ACP on the completion of advanced directives, improved patient and family concordance for preferences for medical care, and receipt of care, there is still a lack of standardized ACP conversation strategies for patients with cancer. Methods: The Key concepts of ACP include (1) assessing patient and family readiness, (2) identifying a surrogate decision maker ( medical power of attorney), (3) exploring patient and family understanding of the disease and treatment options,(4) discussing the values and goals of care, and options for end-of-life care, (5) documenting patient preferences in the medical record, and (6) revisiting the discussions at every change in the treatment plan and /or change in clinical status, including at every hospitalization. Conclusion/Implication for practice: Advance Care Planning (ACP) and end-of-life (EOL) discussions are important for patients, families, and health care providers. Adopting the verbal and nonverbal communication strategies can help overcome the barriers to effective communication on these difficult discussions. ACP with goals of care discussions should not be delayed until the patient is hospitalized.

Keywords: advance care planning, end of life, cancer, global, pandemic

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Authors: W. L. Tsang, H. Y. Li, S. L. Wong, T. Y. Kwok, S. C. Yuen, S. S. Kwok, P. S. Ko, S. Y. Lau

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Introduction: Palliative care is no doubt necessary in surgery. When one looks at studies of what patients with life-threatening illness want and compares to what they experience in surgical units, the gap is huge. Surgical nurses, being patient advocates, should engage with patients and families sooner rather than later in their illness trajectories to consider how to manage the illness, not just their capacity to survive. Objective: This clinical practice guide aims to fill the service gap of palliative care in surgery by producing a quality-driven, evidence-based yet straightforward clinical practice guide based on a focus strategy. Methodology: In line with Guide to Good Nursing Practice: End-of-Life Care recommended by Nursing Council of Hong Kong and the strategic goal of improving quality of palliative care proposed in HA Strategic Plan 2017-2022, multiple phases of work were undertaken from July 2015 to December 2017. A pragmatic clinical practice guide for surgical patients facing life-threatening conditions was developed based on assessments on knowledge of and attitudes towards end-of-life care of surgical nurses. Key domains, including preparation for bereavement, nursing care for imminently dying patients and at the dying scene were crystallized according to the results of the assessments and the palliative care checklist formulated by UCH Palliative Care Team. After a year of rollout, its content was refined through analyses of implementation in routine practice and consensus opinions from frontline nurses. Results and Outcomes: This clinical practice guide inspires surgical nurses with the art of care to provide for patients’ comfort, function, and longevity. It provides practical directions and assists nurses to master the skills on advance care planning and learn how to be clear with patients, families and themselves about the realities of the disease pictures. Through the implementation, patients and families are included in the decision process, and their wishes are honored. The delivery of explicit and high-quality palliative care maintains good nurse-to-patient relations and enhances satisfaction of hospital care of patients and families. Conclusion: Surgical nursing has always been up to the unique challenges of the era. This clinical practice guide has become an island of credibility for our nurses as they traverse the often stormy waters of life-limiting illness.

Keywords: palliative care delivery, palliative care in surgery, hospice care, end-of-life care

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Authors: Goldie Lynn Diaz, Ma. Teresa Tricia G. Bautista, Elisabeth Engeljakob, Mary Glaze Rosal

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Introduction: Residents are expected to convey unfavorable news, discuss prognoses, and relieve suffering, and address do-not-resuscitate orders, yet some report a lack of competence in providing this type of care. Recognizing this need, Family Medicine residency programs are incorporating end-of-life care from symptom and pain control, counseling, and humanistic qualities as core proficiencies in training. Objective: This study determined the competency of Family Medicine Residents from various institutions in Metro Manila on rendering care for the dying. Materials and Methods: Trainees completed a Palliative Care Evaluation tool to assess their degree of confidence in patient and family interactions, patient management, and attitudes towards hospice care. Results: Remarkably, only a small fraction of participants were confident in performing independent management of terminal delirium and dyspnea. Fewer than 30% of residents can do the following without supervision: discuss medication effects and patient wishes after death, coping with pain, vomiting and constipation, and reacting to limited patient decision-making capacity. Half of the respondents had confidence in supporting the patient or family member when they become upset. Majority expressed confidence in many end-of-life care skills if supervision, coaching and consultation will be provided. Most trainees believed that pain medication should be given as needed to terminally ill patients. There was also uncertainty as to the most appropriate person to make end-of-life decisions. These attitudes may be influenced by personal beliefs rooted in cultural upbringing as well as by personal experiences with death in the family, which may also affect their participation and confidence in caring for the dying. Conclusion: Enhancing the quality and quantity of end-of-life care experiences during residency with sufficient supervision and role modeling may lead to knowledge and skill improvement to ensure quality of care. Fostering bedside learning opportunities during residency is an appropriate venue for teaching interventions in end-of-life care education.

Keywords: end of life care, geriatrics, palliative care, residency training skill

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Authors: Seyed Ziya Tabatabaei, Azimi Bin Hj Hamzah, Fatemeh Ebrahimi

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The increase in proportion of older people in Malaysia has led to a significant growth of health care demands. The aim of this study is to explore how perceived health care needs influence on quality of life among elderly Malay residents who reside in a Malaysian residential home. This study employed a method known as ethnographic research from May 2011 to January 2012. Four data collection strategies were selected as the main data-collecting tools including participant observation, field notes, in-depth interviews, and review of related documents. The nine knowledgeable participants for the present study were selected using the purposive sampling method. Two themes were identified: (1) Medical concerns: Feeling secure, lack of information, inadequate medical staff; and (2) Health promotion: Body condition, health education, physiotherapy and rehabilitation. These results could evoke the attention of policy-makers and care providers to better meet elderly residents’ health care needs.

Keywords: ethnographic study, health care needs, Malay elderly people, Malaysia, Quality of life, Residential home

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Authors: Eunkyo Kang, Jihye Lee, Jiyeon Choo

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Background: Pediatric palliative care has been increasing, and the number of studies has focused on the age at which pediatric patient can be notified their terminal illness, pediatric advanced care planning (ACP) and palliative care. However, there is a lack of research on health professionals’ perception. Aim: We aimed to investigate the perceptions of healthcare professionals about appropriate age disclosing terminal illness, awareness of ACP, and the relationship between ACP knowledge and the preference for palliative care for children. Methods: We administered nationwide questionnaires to 928 physicians from the 12 hospitals and the Korean Medical Association and 1,241 individuals of the general Korean population. We asked about the age at which the pediatric patients could be notified of their terminal illness, by 4 groups; 4 years old or older, 12 years old or older, 15 years old or older, or not. In addition, we surveyed the questionnaires about the knowledge of ACP of the medical staff, the preference of the pediatric hospice palliative care, aggressive treatment, and life-sustaining treatment preference. Results: In the appropriate age disclosing terminal illness, there were more respondents in the physicians than in the general population who thought that it was possible even at a younger age. Palliative care preference in pediatric patients who were expected to expire within months was higher when health care professionals had knowledge of ACPs compared to those without knowledge. The same results were obtained when deaths were expected within weeks or days. The age of the terminal status notification, the health care professionals who thought to be available at a lower age have a higher preference for palliative care and has less preference for aggressive treatment and life-sustaining treatment. Conclusion: Despite the importance of pediatric palliative care, our study confirmed that there is a difference in the preference of the health care professionals for pediatric palliative care according to the ACP knowledge of the medical staff or the appropriate age disclosing terminal illness. Future research should focus on strategies for inducing changes in perceptions of health care professionals and identifying other obstacles for the pediatric palliative care.

Keywords: pediatric palliative care, disclosing terminal illness, palliative care, advanced care planning

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Authors: L. Laurs, A. Blazeviciene, D. Milonas

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Introduction: Nursing as a profession is grounded in moral obligation. Nursing practice is grounded in ethical standards: to not harm, to promote justice, to be accountable, and to provide safe and competent care. The nature of the nurse-patient therapeutic relationship requires acting on the patient's behalf. Moral distress consists of negative stress symptoms that occur in situations that involve ethical situations that the nurse perceives as discordant with their professional values. Aim of the Study: The purpose of this study was to assess links between moral distress of registered nurses and factors related to patient care at the end of their life. Methods and Sample: A descriptive, cross-sectional, correlational design was applied in this study. Registered nurses were recruited from seven municipal multi-profile hospitals providing both general and specialized healthcare services in Lithuania (N=1055). Research instruments included two questionnaires: Obstacles and Facilitating at the End of Life Care and Moral Distress Scale (revised). Results: Spearman’s correlation analysis was performed to assess the relationship between nurses' attitudes towards patient care at the end of life and the experienced moral distress. A statistically significant correlation between moral distress and the following factors related to patient end-of-life care has been identified: conversations with physicians on patient end-of-life problems have a positive impact on job satisfaction; some patients may be excluded from decisions about their treatment and nursing because they are questioned about their ability to assess the situation. These situations increased moral distress. Patient consciousness should not be permanently suppressed by calming medications, and the patient should be provided with all nursing care services and moral distress. Conclusions: The moral distress of nurses is significantly related to the end-of-life care of patients and their determinants: moral distress increased due to lack of discussion with doctors about problem-solving and exclusion of patients from decision-making. And it diminished by refusing calming medications to permanently suppress a patient's consciousness and providing good care for patients.

Keywords: moral distress, registered nurses, end of life, care

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Authors: Maha Atout, Pippa Hemingway, Jane Seymour

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Background: A mixed method systematic review was undertaken in order to explore issues related to the experiences of health care providers and parents in the care of children with palliative care needs. The aims of this systematic review were to identify existing evidence about the experiences of communication in the care of children with palliative care needs, to appraise the research conducted in this area and to identify gaps in the literature in order to recommend for future related studies. Method: A mixed method systematic review of research on the experience of communication in the care of children with palliative care needs, conducted with parents and health professionals was undertaken. The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period of 2000-2016. Inclusion was limited to studies of communication experience in the care of children with palliative care needs. Result: Thirty-eight studies were found. The studies were conducted in a variety of countries: Uganda, Jordan, USA, UK, Taiwan, Turkey, Ireland, Poland, Brazil, Australia, Switzerland, Sweden, Netherland, Lebanon, Spain, Greece, and China. The current review shows that parents tend to protect their children when they are discussing their illnesses with them, particularly where they have a life-threatening or life-limiting condition. The approach of parents towards the discussion of sensitive issues concerning death with their children is significantly affected by the cultural background of the families. Conservative cultures encourage collusion behaviours which tend to keep children unaware of the incurable nature of the disease. The major communication challenges reported by health professionals are facing difficulties in judging how much information should be given to parents, responding to difficult questions, conflicts with families and inadequate skills to support grieving families. Conclusion: It is probably significant for the future studies to consider the change of parent-child communication experience over time in order to understand how the parents could change their interaction styles with their children according to the different stages of their children’s disease. Moreover, further studies are required to investigate the experience of communication of parents of children with non-malignant life-threatening and life-limiting illnesses.

Keywords: children with life-threatening or life- limiting illnesses, end of life, experience of communication, healthcare care providers, paediatric palliative care

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Authors: Alex Hughes

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Patients with advanced heart failure develop specific palliative care needs due to the progressive symptom burden and unpredictable disease trajectory. NICE guidance advises that palliative care should be provided to patients with both cancer and non-cancer conditions as and when required. However, there is some way to go before this guidance is consistently and effectively implemented nationwide in conditions such as heart failure. The Ambitions for Palliative and End of Life Care: A national framework for local action in England provides a set of foundations and ambitions which outline a vision for what high-quality palliative and end-of-life care look like in England. This poster aims to critically consider how to improve access to palliative care for heart failure patients in England by analysing the foundations taken from this framework to generate specific recommendations using Soft Systems Methodology (SSM). The eight foundations analysed are: ‘Personalised care planning’, ‘Shared records’, ‘Evidence and information’, ‘Involving, supporting and caring for those important to the dying Person’, ‘Education and training’, ‘24/7 access’, ‘Co-design’ and ‘Leadership.’ A number of specific recommendations have been generated which highlight a need to close the evidence-policy gap and implement policy with sufficient evidence. These recommendations, alongside the creation of an evidence-based national strategy for palliative care and heart failure, should improve access to palliative care for heart failure patients in England. Once implemented, it will be necessary to evaluate the effect of these proposals to understand if access to palliative care for heart failure patients actually improves.

Keywords: access, health systems, heart failure, palliative care

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Authors: R. Bužgová, R. Kozáková, M. Škutová, M. Bar, P. Ressner, P. Bártová

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Introduction: Currently, there has been an increasing concern about the provision of palliative care in non-oncological patients in both professional literature and clinical practice. However, there is not much scientific information on how to provide neurological and palliative care together. The main objective of the project is to create and to verify a concept of neuro-palliative and rehabilitative care for patients with selected neurological diseases in an advanced stage of the disease and also to evaluate bio-psychosocial and spiritual needs of these patients and their caregivers related to the quality of life using created standardized tools. Methodology: Triangulation of research methods (qualitative and quantitative) will be used. A concept of care and assessment tools will be developed by analyzing interviews and focus groups. Qualitative data will be analyzed using grounded theory. The concept of care will be tested in the context of the intervention study. Using quantitative analysis, we will assess the effect of an intervention provided on the saturation of needs, quality of life, and quality of care. A research sample will be made up of the patients with selected neurological diseases (Parkinson´s syndrome, motor neuron disease, multiple sclerosis, Huntington’s disease), together with patients´ family members. Based on the results, educational materials and a certified course for health care professionals will be created. Findings: Based on qualitative data analysis, we will propose the concept of integrated care model combining neurological, rehabilitative and specialist palliative care for patients with selected neurological diseases in different settings of care and services. Patients´ needs related to quality of life will be described by newly created and validated measuring tools before the start of intervention (application of neuro-palliative and palliative approach) and then in the time interval. Conclusion: Based on the results, educational materials and a certified course for doctors and health care professionals will be created.

Keywords: multidisciplinary approach, neuropalliative care, research, quality of life

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Authors: Louise Elizabeth Bolton

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Statement of the problem: There are an estimated 328 million cases of COPD worldwide. It is likely to become the third biggest cause of death by 2030. The impact of living with palliative care needs arising from COPD disrupts an individual’s existential situation. Understandings of individuals' existential situations within COPD are limited within the research literature and are rarely addressed within clinical practice, yet existential suffering has been linked to poor health-related quality of life for those living with other chronic conditions. The purpose of this integrative review is to provide a synthesis of existing evidence on existential suffering for those living with palliative care needs arising from COPD. Methods: This is an integrative review undertaken in accordance with PRISMA guidelines. Nine electronic databases were searched from April 2019 to January 2021. Thirty-five empirical research papers of both qualitative and quantitative methodologies, alongside systematic literature reviews, were included. Data analysis was undertaken using an integrative thematic analysis approach. Findings: Identified themes of existential suffering when living with palliative care needs arising from COPD are as follows: Liminality, Lamented Life, Loss of Personal Liberty, Life Meaning and Existential isolation. The absence of life meaning and purpose was of most importance to patients. Conclusion and Significance: This integrative review provides a synthesis of international evidence upon the presence of existential suffering. It is present and of significant impact within the daily lives of those living with palliative care needs arising from COPD. The absence of life meaning has the most significant impact, requiring further exploration of both its physical and psychological impact. Rediscovery of life meaning diminishes feelings of worthlessness and hopelessness in daily life and facilitates feelings of inner peace. For those with COPD living with such a relentless symptom burden, a positive existential situation is desirable.

Keywords: palliative care, COPD, existential suffering, end of life care

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Authors: Lindy Van Vliet, Saloni Phadke, Anthea Nelson, Ann Gallant

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Comprehensive and compassionate palliative care and support requires an integrated system of care that draws on formal health and social service providers working together with community and informal networks to ensure that patients and families have access to the care they need. The objective of this study is to further explore and understand the community supports, services, and informal networks that health care professionals and social service providers rely on to allow their patients to die in their homes and communities. Drawing on an interpretivist, exploratory, qualitative design, our multidisciplinary research team (medicine, nursing and social work) conducted interviews with 15 health care and social service providers in the Ottawa region. Interview data was audio-recorded, transcribed and analyzed using a reflexive thematic analysis approach. The data deepens our understandings of the facilitators and barriers that arise as health care and social service providers attempt to build networks of care for patients with life limiting illnesses and families. Three main findings emerged: First, the variability that arises due to systemic barriers in accessing and providing care; second, the exceptionally challenging workload that providers are facing as they work to address complex social care needs (housing, disability, food security), along with escalating palliative care needs; and, finally, the lack of structural support that providers and informal care networks receive. Conclusion: These findings will facilitate and build stronger person-centred/relationship-centred principles and practices between providers, patients, community, and informal care networks by highlighting the systemic barriers to accessing and providing person-centred care. Further, they will have important implications for future partnerships in integrated care delivery programs and initiatives, community policies, education programs, and provincial and national palliative care strategies.

Keywords: public health palliative care, palliative care nursing, care networks, informal care, integrated health care

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Authors: Naseem M. Twaissi

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Medical professionals play an important role in society, and in general, they care more about their patients than about their personal well-being. They need to take a professional approach to maintain a work-life balance. Through a collection of primary data from 1020 medical professionals and the application of relevant statistical tools, this paper explores the pressures on medical professionals with reference to their work-life balance. This study highlights how hospital management, in addition to economic reasons, needs to identify variables to enhance the work-life balance of medical professionals so that quality healthcare facilities may be provided to the citizens of Jordan. Results indicate that formulation and implementation of policies for enhancing work-life balance together with career and retention plans for medical professionals would enhance the performance of hospitals and the quality of health care in Jordan, leading to greater societal well-being.

Keywords: work life balance, job environment, job satisfaction, employee well-being, stress, hospital industry

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Authors: Chao Fang

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Due to the Confucian emphasis on filial piety and an undeveloped social welfare system in mainland China, adult children are both socially and legally obliged to care for their parents, including financial assistance and physical care as well as emotional and social support. Thus a family-centred care pattern for elderly people has been firmly established in China. However, because of the nationwide ‘One Child Policy’, over one million parents are excluded from such care because of the death of their only child and, therefore, their primary caregiver. Without their child’s support, these parents must manage the day to day challenges of growing old alone, with little support from society. By overturning established expectations of a ‘good’ elderly life, the loss of an only child may be accompanied by social and self-stigmatization, pushing these bereaved parents to the margin of society and threatening their economic, physical, emotional and social well-being. More importantly, since the One Child Policy was implemented from the late 1970s and early 1980s, the first generation of bereaved or ‘Shidu’ parents has reached an age at which those parents need elderly care. However, their predicament has been largely ignored. This paper reports on a qualitative interview study that found elderly care to be the main concern for Shidu parents’ everyday life. The paper identifies and discusses the concerns these bereaved parents raised about the prospect of having nowhere to turn at a time of increased need for financial, physical, social and emotional support in old age. The paper also identifies how Shidu parents have been coming together in grief and negotiate to make their predicament known to the government and wider society and to re-define their elderly life by rebuilding a sense of ‘family’.

Keywords: culture, bereavement, China, elderly care

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Authors: Aditya Manna, Lalit Kumar Khanra, Shyamal Kumar Sarkar

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Introduction: Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. Objective: To identify and try to solve, to the extent possible, the main difficulties in giving palliative care to the terminal cancer patients of the area. And evaluate the impact of volunteer’s direct care of palliative patients and their families. Methods: Feedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. Results: We carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. Since January 2015, 496 cases were studied to enquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. Conclusions: Further research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere.

Keywords: palliative care, terminal care, cancer, home care

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Authors: Lindy Van Vliet, Saloni Phadke, Anthea Nelson, Ann Gallant

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Holistic and patient-centred palliative care and support require an integrated system of care that includes health and social service providers working together to ensure that patients and families have access to the care they need. The objective of this study is to further explore and understand the benefits and challenges of mobilizing multidisciplinary care teams for health care professionals and social service providers. Drawing on an interpretivist, exploratory, qualitative design, our multidisciplinary research team (medicine, nursing and social work) conducted interviews with 15 health care and social service providers in the Ottawa region. Interview data was audio-recorded, transcribed, and analyzed using a reflexive thematic analysis approach. The data deepens our understandings of the facilitators and barriers posed by multidisciplinary care teams. Three main findings emerged: First, the data highlighted the benefits of multidisciplinary care teams for both patient outcomes and quality of life and provider mental health; second, the data showed that the lack of a system-wide integrated communication system reduces the quality of patient care and increases provider stress while working in multidisciplinary care teams; finally, the data demonstrated the existence of implicit hierarchies between disciplines, this coupled with different disciplinary perspectives of palliative care provision can lead to friction and challenges within care teams. These findings will have important implications for the future of palliative care as they will help to facilitate and build stronger person-centred/relationship-centred palliative care practices by naming the challenges faced by multidisciplinary palliative care teams and providing examples of best practices.

Keywords: public health palliative care, palliative care nursing, care networks, integrated health care, palliative care approach, public health, multidisciplinary work, care teams

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Authors: M. Yaqoob, C. S. O’Neill, S. Faraj, C. L. O’Neill

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This paper presents the preliminary findings from a study exploring nurse’s contributions to end of life decisions and to the care of dying patients in ICU units in the Kingdom of Bahrain. The process of dying is complex as medical clinicians are frequently unable to say with certainty when death will occur. It is generally accepted that end of life care begins when it is possible to know that death is imminent. Nurses do not make medical treatment decisions when caring for a dying patient. There are, however, many other types of decisions made when a patient is approaching the end of life and nurses are either formally or informally part of these decision making processes. This study explored nurses care practices at the end of life, in two ICU units in large hospitals in the Kingdom of Bahrain. The research design was a grounded theory approach. Ten nurses participated, six of whom were Bahraini nationals and four were Indian. A core category death avoidance talk was supported by three major subcategories, degrees of involvement in decision making; signalling and creating an awareness of death; care shifting from dying patients to family. Despite nurses asserting that they carried out the orders of doctors and had no role in decision making processes at end of life this study showed that there were degrees of nurse involvement. Doctors frequently discussed the patient’s clinical condition with nurses and also sought information regarding the family. Information about the family was of particular relevance if the doctor was considering a DNR order, which the nurses equated with dying. Families were not always informed when a DNR decision was made. When families were not informed the nurses engaged in sophisticated rituals signalling and creating awareness to family members that the death of their loved one was near. This process also involved a subtle shifting of care from the dying patient to the family. This seminar paper will focus particularly on how nurses signal and create an awareness of death in an ICU setting. The findings suggest that despite the avoidance of death talk in the ICU nurses indirectly convey and create an awareness that death is near to family members.

Keywords: decision making, dying patients, end of life, intensive care unit

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Authors: Miriam Colleran, Barbara Sheehy-Skeffington

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Background: Patients with intellectual disabilities have specific palliative care needs, which can affect how resources and services are planned for this type of patient population. Aim: The purpose of this practice review is to assess the indications for, numbers of and outcomes of care for adults with intellectual disabilities referred to a specialist palliative care service over a two-year period. Service utilization aspects considered included the frequency of home visits by a specialist palliative care doctor or clinical nurse specialist and the number of hospice admissions that occurred for the patients. Method: A retrospective review was carried out of persons 18 years and older with intellectual disabilities referred to a specialist palliative care service. A manual review was carried out of the register using the place of residence and diagnosis in addition to the patients known to the clinicians who had intellectual disabilities. Results: 16 persons with intellectual disabilities were identified as being referred during that time. However, this may be an underestimate. 8 women and 8 men were referred with an age range of 50 to 81 years old. 4 patients referred did not have home visits from the specialist palliative care team. A range of 2 to 12 phone calls per person occurred by the specialist palliative care team regarding this cohort of patients. For some patients, the care is ongoing. Sadly, other patients died. Conclusion: Providing specialist palliative care for adults with intellectual disabilities is an important element of palliative care. Further research is necessary, and education to inform, support and empower specialist palliative care professionals in optimizing palliative and end-of-life care for persons with intellectual disabilities and to inform service development and provision.

Keywords: palliative care, intellectual disabilities, service planning, practice review

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