-
An evaluation of the adequacy of Indian national and state Essential Medicines Lists (EMLs) for palliative care medical needs - a comparative analysis medRxiv. Palliat. Med. Pub Date : 2024-08-28 Disha Agrawal, Divya Shrinivas, Parth Sharma, M R Rajagopal, Arun Ghoshal, Siddhesh Zadey
Objectives: Essential Medicines Lists (EMLs) guide the public sector procurement and supply of medications to impact access to adequate and appropriate palliative care drugs. This study evaluates the adequacy of India's national and sub-national EMLs that can directly impact palliative care for 5.4 million patients. Methods: In this qualitative document review, we compared Indian national, and state
-
Development and evaluation of an online training program for palliative care in India medRxiv. Palliat. Med. Pub Date : 2024-08-26 Varun Raj Passi, Sreedevi Warrier, Rajalekshmi Balu, Sunilkumar MM, Parth Sharma
Objective: Palliative care training at the undergraduate level is poor in India. With the need for palliative care rising in India and globally, it is possible to train physicians in resource-limited settings in palliative care via online training programs owing to ease of access and convenience. However, there is limited evidence available from India on the development and implementation of such a
-
Cross-Cultural Adaptation of the Physician Orders for Life-Sustaining Treatment Form in Greece; a pilot cross-sectional descriptive study medRxiv. Palliat. Med. Pub Date : 2024-08-16 Dimitrios Chris Moustakas, Alexia Bani, Eleni Ntalaouti, Nikolaos Vechlidis, Charalampos Charalampidis, Stamatios Chalvatzis, Sotiria Grigoropoulou, Stylianos Faltsetas, Dimitrios T. Boumpas, Evrydiki Kravvariti, Theodoros Trokanas, Effy Vayena, Sotirios Tsiodras
The current legal framework in Greece does not permit withholding medical interventions to allow natural death, leading to a lack of documented advance directives to guide clinical practice. The aim of this pilot descriptive study is to culturally adapt the Physician Orders for Life-Sustaining Treatment (POLST) form, and use it as a framework with which to assess the readiness of Greek residents for
-
Utilising the Palliative Prognostic Index in a mixed non-malignant and malignant patient group to determine prognosis. A general medicine tool for prognostication medRxiv. Palliat. Med. Pub Date : 2024-07-24 Joseph Hawkins, Megan C Lester
Objectives: This study tested the use of the Palliative Prognostic Index (PPI), an established cancer prognostic tool, in a general medicine group within an acute setting for non-selective adult palliative care. The PPI score ranges from 0 to 15, with scores <6 indicating a prognosis of over 6 weeks and scores >6 indicating under 3 weeks. Methods: Data from 256 patients seen over three months by the
-
Pseudoscience in Cancer Services; a survey of National Health Service Trusts in England medRxiv. Palliat. Med. Pub Date : 2024-06-27 Leslie Rose
Scientifically implausible treatments are offered by some hospital cancer departments. Examples are reiki, aromatherapy, and reflexology. Salaried practitioners are employed to deliver these therapies, which are provided as palliative care, although they lack evidence of effectiveness. Such practices seem to conflict with efforts to make health care evidence based. The aim of this survey was to estimate
-
Prevalence and associated factors of psychological distress among patients with oral cancer in Sri Lanka medRxiv. Palliat. Med. Pub Date : 2024-06-21 Nadisha Ratnasekera, Irosha Perera, Pushpakumara Kandapola Arachchige, Sumeth Perera, Prasanna Jayasekara
Introduction Oral cancer is the most common among Sri Lankan males leading to psychological distress due to its impact on the appearance and vital functions. While the negative effects of psychological distress on these patients are well known, its prevalence and associated factors remain largely unknown in Sri Lanka. This study aimed to assess the prevalence and the associated factors of psychological
-
Patient and public experience and views on digital systems for sharing records for health and care preferences at the end of life medRxiv. Palliat. Med. Pub Date : 2024-06-20 Jacqueline Birtwistle, Amy M Russell, Samuel Relton, Hannah Easdown, Usha Grieve, Matthew Allsop
Objective: To explore patient and public experiences of and priorities for the use of shared patient health records for advance care planning. Methods: A convergent-parallel mixed method design was used. An online national survey of patients and the public gathered data on experiences and views of sharing health and advance care planning information to support care at the end of life. Descriptive statistics
-
Medical care needs and experiences of LGBTQ populations in Japan medRxiv. Palliat. Med. Pub Date : 2024-05-31 Hiroyuki Otani, Tatsuya Morita, Hongja Kim, Kaori Aso, Misuzu Yuasa, Hideyuki Kashiwagi, Kiyofumi Oya, Akemi Shirado Naito
This study comprehensively examines the medical needs and experiences of the lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) population—also referred to as sexual minorities—in Japan. It aims to bridge the existing gap in understanding the experiences of LGBTQ populations in accessing healthcare, and inform future healthcare reforms. In November 2022, a cross-sectional
-
A Three-Year Retrospective Review of Gynecologic Oncology Referrals to the Specialist Palliative Care Team in a Tertiary Referral Centre: Population, Characteristics, and Outcomes medRxiv. Palliat. Med. Pub Date : 2024-05-27 Anthony James Goodings, Mila Pastrak, Sten Kajitani, Elaine Cunningham, Hannah O’Brien, Catherine Weadick, Karie Dennehy
Background The early integration of a specialist palliative care team is demonstrated to have numerous benefits for patients. These extend beyond end-of-life care to include reducing depressive symptoms, improving quality of life, and reducing unnecessary interventions.
-
Integrating Step-down Care in Community-based Paediatric Palliative Services: A Realist Evaluation medRxiv. Palliat. Med. Pub Date : 2024-03-09 Zhi Zheng Yeo, Poh Heng Chong
Background: Young persons with advanced life-limiting illness living at home have fluctuating and complex needs. Community paediatric palliative care (PPC) is still predominantly specialist-led. This poses a potential care vacuum as medical conditions stabilise and specialised care ceases. One home-based PPC service introduced a step-down care program (COMET) as bridge to continuous yet adaptable support
-
Novel Approach to Advance Directive Training : Palliative Fellow Led Workshop Feasible and Effective in Increasing Confidence in End of Life Conversations medRxiv. Palliat. Med. Pub Date : 2024-03-07 Chelsea Chang, Jose Rafael Cano Penaloza, Juan Lopez-Alvarenga, Josenny Rodriguez-Paez, Sonya Montes, Meghana Rao
Despite the benefits of Advance directives, approximately only 1 in 3 U.S adults have documented advance directives. In medical school and residency, learners are often not taught or given very brief information on conducting end-of-life planning conversations with patients. Due to this deficiency, some institutions have conducted advance directive workshops but not many have been both palliative fellow
-
Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology medRxiv. Palliat. Med. Pub Date : 2024-03-01 Xiaoxiao J Kwete, Afsan Bhadelia, Hector Arreola-Ornelas, Oscar Mendez, William E. Rosa, Stephen Connor, Julia Downing, Dean Jamison, David Watkins, Renzo Calderon, Jim Cleary, Joe Friedman, Liliana De Lima, Christian Ntizimira, Tania Pastrana, Pedro E. Perez-Cruz, Dingle Spence, M.R. Rajagopal, Valentina Vargas Enciso, Eric L. Krakauer, Lukas Radbruch, Felicia Marie Knaul
Inequities and gaps in palliative care access are a serious impediment to health systems especially low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission
-
Prevalence of falls in the last weeks of life and relationship between falls, independence, and quality of dying: A secondary analysis of a large prospective cohort study medRxiv. Palliat. Med. Pub Date : 2024-02-13 Hiroyuki Otani, Shimoinaba Junichi, Kashiwagi Hideyuki, Morita Tatsuya, Maeda Isseki, Yokomichi Naosuke, Hamano Jun, Yamaguchi Takashi, Takashi Yamaguchi, Masanori Mori
Objective: To determine the frequency of falls and their serious complications in palliative care units (PCUs), as well as explore the complex interplay between falls, independence, and quality of dying. Methods: A secondary analysis of a large prospective cohort study of 23 PCUs in Japan was conducted from January 2017 to June 2018. Palliative care specialist physicians recorded whether patients experienced
-
Outcomes of prognostication in people living with advanced cancer: a qualitative study to inform a Core Outcome Set medRxiv. Palliat. Med. Pub Date : 2024-02-12 Caitlin Spooner, Bella Vivat, Nicola White, Patrick Stone
Background: Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study is the second step in developing such a Core Outcome Set, with the aim to explore
-
Effectiveness of Psychosocial care interventions in improving the Quality of Life for Adult Patients with Cancer in low-and middle-income countries (LMICs): A Systematic Review and Meta-Analysis Protocol medRxiv. Palliat. Med. Pub Date : 2024-02-09 David Kavuma, EVe Namisango, Julia Downing, Nixon Nionzima, Alison Annet Kinengyere, Simon Kasasa, Frederick Edward Makumbi, Anthony Ekwaro Obuku, Fred Nuwaha Ntoni
Background Psychosocial care interventions are part and parcel of cancer care and are known for their significant contribution to the improvement of the quality of life (QoL) for cancer patients and their families. Assessment of the QoL of patients with cancer and their families has become critical in cancer care nowadays since it guides health care providers in making informed decisions during the
-
Telephone advice lines available out-of-hours to people with palliative and end-of-life care needs: a qualitative interview study with professionals and development of a practical framework to improve services medRxiv. Palliat. Med. Pub Date : 2023-10-21 Sophie Pask, Allen Omoruyi, Ahmed Mohamed, Rachel L Chambers, Philippa G McFarlane, Therese Johansson, Rashmi Kumar, Andrew Woodhead, Ikumi Okamoto, Stephen Barclay, Irene J Higginson, Katherine E Sleeman, Fliss EM Murtagh
Background People living at home with advanced illness require around-the-clock care. Telephone-based advice lines are critical for accessing help, yet evidence is limited. Aim To explore out-of-hours telephone-based advice lines available to adults living at home with advanced illness and their carers across the UK, and construct a practical framework to improve services. Design Structured qualitative
-
A prediction algorithm to improve the accuracy of the Gold Standard Framework Surprise Question end-of-life prognostic categories in an acute hospital admission cohort-controlled study. The Proactive Risk-Based and Data-Driven Assessment of Patients at the End of Life (PRADA). medRxiv. Palliat. Med. Pub Date : 2023-09-08 Baldev M Singh, Nisha Kumari-Dewat, Adam Ryder, Vijay Klaire, Gemma Bennion, Hannah Jennens, Dawn Matthews, Sophie Rayner, Benoit Ritzenthaler, Jean Shears, Kamran Ahmed, Mona Sidhu, Ananth Viswanath, Kate Warren, Emma Parry
Abstract Objective To determine the accuracy of a clinical data algorithm allocated end of life prognosis amongst hospital inpatients. Method The model allocated a predicted Gold Standard Framework end of life prognosis to all acute medical patients admitted over a 2-year period. Mortality was determined at 1 year. Results Of 18,838 patients, end of life prognosis was unknown in 67.9%. A binary logistic
-
Non-invasive technology to assess hydration status in advanced cancer to explore relationships between fluid status and symptoms: an observational study using bioelectrical impedance analysis medRxiv. Palliat. Med. Pub Date : 2023-09-06 Amara Callistus Nwosu, Sarah Stanley, Catriona R Mayland, Stephen Mason, Alexandra McDougall, John Ellershaw
Background Oral fluid intake decreases in people with advanced cancer, especially when they approach the dying phase of their illness. There is inadequate evidence to support hydration assessment and decision making in the dying phase of illness. Bioelectrical impedance analysis (BIA) and vector analysis (BIVA) are validated methods of hydration assessment, with research demonstrating that hydration
-
A rapid systematic review of the effectiveness of out-of-hours palliative care telephone advice lines for people living at home and their carers medRxiv. Palliat. Med. Pub Date : 2023-08-31 Therese Johansson, Rachel Chambers, Thomas C Curtis, Sophie Pask, Sarah Greenley, Molly Brittain, Anna E Bone, Lynn Laidlaw, Ikumi Okamoto, Stephen Barclay, Irene J Higginson, Fliss E. M. Murtagh, Katherine E Sleeman
Background: People with palliative and end-of-life care needs in the community and their carers often rely on out-of-hours services to remain at home. Policymakers internationally have recommended implementation of telephone advice lines to ensure 24-hour access to support. However, little is known about their effectiveness. Aim: To review the evidence for the clinical and cost effectiveness of out-of-hours-
-
Predictors of Intense Treatment in the Emergency Department Among Older Adults With Serious Life-Limiting Illnesses: A Five-Year Cross-sectional Analysis of Medicare Claims Data medRxiv. Palliat. Med. Pub Date : 2023-06-20 Oluwaseun John Adeyemi, Nina Siman, Keith Goldfeld, Jacob Hill, Allison Cuthel, Charles DiMaggio, Joshua Chodosh, Corita Grudzen
Background: Treatment intensity of end-of-life care is the degree of aggressiveness of medical care aimed at providing life-prolonging medical care to patients with serious life-limiting illnesses. This study aims to assess the demographic and health characteristics associated with older adults with serious life-limiting illnesses who received highly intense end-of-life care. Methods: For this cross-sectional
-
Planning ahead for research participation: survey of public and professional stakeholders’ views about the acceptability and feasibility of advance research planning medRxiv. Palliat. Med. Pub Date : 2023-04-27 Victoria Shepherd, Kerenza Hood, Fiona Wood
Introduction To date, anticipatory planning in the UK has focused on supporting people who anticipate periods of impaired decisional capacity to express their wishes about their future care through processes such as advance care planning. Other countries have extended anticipatory planning to include mechanisms for people to prospectively express their preferences about research participation. Advance
-
The development of a guidance document for interprofessional collaborative advance care planning in dementia care medRxiv. Palliat. Med. Pub Date : 2023-01-26 Chandni Khemai, Daisy J.A. Janssen, Jerome Van Dongen, Jesper Biesmans, Jos M.G.A. Schols, Sascha R. Bolt, Judith M.M. Meijers
Advance care planning (ACP) is an essential part of palliative dementia care and should embrace a collaborative approach involving persons with dementia, family members and various healthcare professionals (HCPs). This study aimed to develop a guidance document for IPC in ACP in dementia care for HCPs from nursing homes, using a mixed-method design and taking an appreciative inquiry approach comprising
-
An observational study of survival outcomes of people referred for ‘fast-track’ end-of-life care funding in a District General Hospital; too little too late? medRxiv. Palliat. Med. Pub Date : 2022-12-26 Jo Morrison, Cherry Chowdhary, Ryan Beazley, James Richards, Charlie Davis
Background End-of-life care frequently requires support for people to die where they feel safe and well-cared for. End-of-life care may require funding to support dying outside of hospital. In England, funding is procured through Continuing Healthcare Fast-Track funding, requiring assessment to determine eligibility. Anecdotal evidence suggested that Fast-Track funding applications were deferred where
-
A mixed methods exploratory study of family experiences of anticipatory injectable medicines at home: It's a really good idea but it's just implementing it. medRxiv. Palliat. Med. Pub Date : 2022-12-05 christina Faull, Alison Pilsworth, Kerri Mcevoy, Helen Hughes, Lucy Bleazard, Anne Patterson
Objectives To explore the experiences of bereaved family of anticipatory (JIC) injectable medications for symptom management and to identify ways to improve practice. Methods A single site, mixed methods study in two phases. A postal questionnaire sent to 100 family carers (FCs) achieved a 38% response rate of whom 79% volunteered for an interview and 14 were sampled to reflect use of medication, concerns
-
Life expectancy, quality of life, and hope among Japanese patients receiving home medical care medRxiv. Palliat. Med. Pub Date : 2022-09-14 Masakazu Yasunaka, Yukio Tsugihashi, Shinu Hayashi, Hidekazu Iida, Misaki Hirose, Yutaka Shirahige, Noriaki Kurita, the ZEVIOUS group
Background Spiritual care should be included in home medical care for patients with limited life expectancy. However, the effect of shortened life expectancy on patients’ quality of life (QOL) and hopes is poorly understood.
-
Advanced Care Planning (ACP) in the early phase of COVID-19: A rapid review of the practice and policy lessons learned medRxiv. Palliat. Med. Pub Date : 2022-09-06 Sarah Younan, Magnolia Cardona, Ashlyn Sahay, Eileen Willis, Danielle Ni Chroinin
This rapid review of quantitative and qualitative publications of any design indexed in PUBMED between January 2020-April 2021 investigates barriers and enablers of advancecare planning (ACP) worldwide in the early stages of the life-threatening COVID-19 pandemic. Seventy-four papers were included: 35 primary research studies (cohorts, reviews, case studies, and cross-sectional designs) and 39 commentaries
-
Duration of referral-to-death and its influencing factors among cancer and non-cancer patients: perspective from a community palliative care setting in Malaysia medRxiv. Palliat. Med. Pub Date : 2022-08-18 Yan Yee Yip, Wen Yea Hwong, Sylvia Ann McCarthy, Aidah Abdul Hassan Chin, Yuan Liang Woon
Objectives To compare the referral-to-death duration among palliative cancer and non-cancer patients and to determine its influencing factors in a Malaysian community hospice.
-
COGNITION AND INFLUENCING FACTORS OF HOSPICE CARE AMONG NURSING UNDERGRADUATES medRxiv. Palliat. Med. Pub Date : 2022-08-01 Rui-ting Zhang
Objective To investigate the current cognition of hospice care among nursing undergraduates, and analyze the influencing factors affecting their cognition, so as to provide suggestions for improving the cognition of hospice care among nursing undergraduates.
-
User-centred Design of a Clinical Decision Support System for Palliative Care: Insights from Healthcare Professionals medRxiv. Palliat. Med. Pub Date : 2022-06-29 Vicent Blanes-Selva, Sabina Asensio-Cuesta, Ascensión Doñate-Martínez, Felipe Pereira Mesquita, Juan M. García-Gómez
Clinical Decision Support Systems (CDSSs) could offer many benefits to clinical practice, but they present several adoption barriers regarding their acceptance and usability by professionals. Our objective in this study is to validate a Palliative Care CDSS, The Aleph, through a user-centred methodology, considering the predictions of the AI core, the usability, and the user experience. We performed
-
Symptom Management When Non-Invasive Advanced Respiratory Support is Used During End-of-Life Care: A Systematic Review medRxiv. Palliat. Med. Pub Date : 2022-03-30 David Wenzel, Lucy Bleazard, Coral Pepper, Christina Faull
Objectives to narrate the canon of knowledge around symptom control at end of life for patients using, or having recently used, non-invasive advanced respiratory support (NARS) at end of life for respiratory failure.
-
The Impact on Staff of Providing Non-Invasive Advanced Respiratory Support During the Covid-19 Pandemic– A Qualitative Study in an Acute Hospital medRxiv. Palliat. Med. Pub Date : 2022-03-27 David Wenzel, Lucy Bleazard, Eleanor Wilson, Christina Faull
Objectives To explore the experiences of healthcare workers of providing Non-Invasive Advanced Respiratory Support (NARS) to critically unwell patients with covid-19.
-
Existential suffering as a motive for assisted suicide: difficulties, acceptability, management and roles from the perspectives of Swiss professionals medRxiv. Palliat. Med. Pub Date : 2022-03-23 Marie-Estelle Gaignard, Sophie Pautex, Samia Hurst
Background Existential suffering is often a part of the requests for assisted suicide (AS). Its definitions have gained in clarity recently and refer to a distress arising from an inner realization that life has lost its meaning. There is however a lack of consensus on how to manage existential suffering, especially in a country where AS is legal and little is known about the difficulties faced by
-
Palliative care in the treatment of women with breast cancer: a scoping review protocol medRxiv. Palliat. Med. Pub Date : 2022-03-22 Romel Jonathan Velasco-Yanez, Ana Fátima Carvalho Fernandes, Samuel Miranda Mattos, Thereza Maria Magalhães Moreira, Régia Christina Moura Barbosa Castro, Luís Carlos Lopes-Júnior
Introduction Palliative care is an approach that improves patients’ quality of life and their families when they face problems inherent to a life-threatening illness. In the current scenario where breast cancer ranks first among the most common types of cancer in women, research has revealed little control by these patients over the symptoms of the disease and its treatment, resulting in poor quality
-
Toward a preventive approach to prolonged grief disorder in palliative care: Insecure attachment moderates the impact of perceived support on the severity of symptoms medRxiv. Palliat. Med. Pub Date : 2022-03-21 Vittorio Lenzo, Alberto Sardella, Cristina Faraone, Maria C. Quattropani
Objective This study aimed to investigate the relationships between the perceived support at the time of assistance, insecure attachment (i.e., avoidance and anxious attachment factors), and the prolonged grief symptoms in family caregivers of palliative care patients deceased for at least one year. We also investigated the moderating role of insecure attachment in the relationship between perceived
-
Withdrawal of Assisted Ventilation at the Patient’s Request in MND/ALS: A Retrospective Exploration of the Ethical and Legal Issues Concerning Relatives, Nurses and Allied Health Care Professionals medRxiv. Palliat. Med. Pub Date : 2022-03-16 K. Phelps, E. Regen, C.J. McDermott, D.J. Oliver, C. Faull
Background There is little literature focusing on the issues relatives and health professionals encounter when withdrawing assisted ventilation at the request of a patient with MND/ALS.
-
“I wanna live and not think about the future” What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study medRxiv. Palliat. Med. Pub Date : 2022-03-16 Jonathan Koffman, Clarissa Penfold, Laura Cottrell, Bobbie Farsides, Catherine J Evans, Rachel Burman, Richard Nicholas, Stephen Ashford, Eli Silber
Background Little is known about how people with multiple sclerosis and their families comprehend advance care planning (ACP) and its relevance in their lives.
-
Hypnosis and music interventions for pain, anxiety, sleep, and well-being in palliative care: a systematic review and meta-analysis medRxiv. Palliat. Med. Pub Date : 2022-01-21 Josiane Bissonnette, Émilie Dumont, Anne-Marie Pinard, Mathieu Landry, Pierre Rainville, David Ogez
Background Maintaining quality of life is a primary goal of palliative care (PC). Complementary interventions can help meet the needs of patients at the end of life.
-
Experiences of staff providing specialist palliative care during COVID-19 A multiple qualitative case study medRxiv. Palliat. Med. Pub Date : 2021-11-20 Andy Bradshaw, Lesley Dunleavy, Ian Garner, Nancy Preston, Sabrina Bajwah, Rachel Cripps, Lorna K Fraser, Matthew Maddocks, Mevhibe Hocaoglu, Fliss EM Murtagh, Adejoke O Oluyase, Katherine E Sleeman, Irene J Higginson, Catherine Walshe, on behalf of the CovPall study team
Objectives To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic.
-
Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic medRxiv. Palliat. Med. Pub Date : 2021-09-14 LE Selman, DJJ Farnell, M Longo, S Goss, K Seddon, A Torrens-Burton, CR Mayland, D Wakefield, B Johnston, A Byrne, E Harrop
Objectives To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement.
-
Nurse-physician Communication around Identifying Palliative Care Needs in Nursing Home Residents medRxiv. Palliat. Med. Pub Date : 2021-08-28 Jenny T. van der Steen, Esmée A. Jongen, Natashe Lemos Dekker, Lotje Bagchus, H. Roeline W. Pasman, Bregje D. Onwuteaka-Philipsen, Wilco P. Achterberg
Objective To assess experiences of medical practitioners who are on the staff of nursing homes with communication with nursing staff about identifying emerging and changing (palliative) care needs of residents of nursing homes in the Netherlands.
-
Complementary frailty and mortality prediction models on older patients as a tool for assessing palliative care needs medRxiv. Palliat. Med. Pub Date : 2021-08-28 Vicent Blanes-Selva, Ascensión Doñate-Martínez, Gordon Linklater, Juan M. García-Gómez
Introduction Palliative care (PC) has demonstrated benefits for life-limiting illnesses. Nowadays, there is a growing consensus about giving access these care services to non-cancer older patients. Bad survival prognosis and patients’ decline are working criterions to guide PC decision making.
-
Natural Language Word-Embeddings as a glimpse into healthcare at the End Of Life medRxiv. Palliat. Med. Pub Date : 2021-07-24 Shun Lau, Zeljko Kraljevic, Mohammad Al-Agil, Shelley Charing, Alan Quarterman, Harold Parkes, Victoria Metaxa, Katherine Sleeman, Wei Gao, Richard Dobson, James T Teo, Phil Hopkins
Introduction Planning in advance and personalised discussions on limitation of life sustaining treatment (LST) is an indicator of good care. However, there are many linguistic nuances and misunderstandings around dying in hospital as well as inaccuracy in individual-level prognostication.
-
Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method medRxiv. Palliat. Med. Pub Date : 2021-07-03 Amara Callistus Nwosu, Tamsin McGlinchey, Justin Sanders, Sarah Stanley, Jennifer Palfrey, Patrick Lubbers, Laura Chapman, Anne Finucane, Stephen Mason
Background Developments in digital health (describing technologies which use computing platforms, connectivity, software, and sensors for health care and related purposes) has the potential to transform the delivery of health and social care to help citizens manage their own health. Currently, we lack consensus about digital health research priorities in palliative care and lack theories about how
-
A thematic analysis of Prison and Probation Ombudsman fatal incident reports involving prisoners on palliative/end-of-life care pathways in the long-term high security estate in England and Wales medRxiv. Palliat. Med. Pub Date : 2021-06-29 Joanne Kirkham
Objectives In this study, the clinical and non-clinical factors that may influence the provision of palliative/end of life care in long-term high security prisons in England and Wales are identified through the lens of Prison and Probation Ombudsman (PPO) fatal incident reports. Methods This work extends that of McParland and Johnston (2019) and contemporary literature published in the subsequent period
-
Development and operationalization of an electronic palliative care registry in a large integrated health system medRxiv. Palliat. Med. Pub Date : 2021-06-01 Sylvia EK Sudat, Kathy Blanton
Background Palliative care teams generally lack prospective tools to identify individuals who could benefit from specialty palliative care, which hinders their ability to find and treat patients early in their illness trajectories. Health systems are also limited in their ability to assess how well their palliative care services reach the population in need, which in turn makes it much more difficult
-
Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data medRxiv. Palliat. Med. Pub Date : 2021-04-19 Joanne Bayly, Andy Bradshaw, Lucy Fettes, Muhammed Omarjee, Helena Talbot-Rice, Catherine Walshe, Katherine E Sleeman, Sabrina Bajwah, Lesley Dunleavy, Mevhibe Hocaoglu, Adejoke Oluyase, Ian Garner, Rachel L Cripps, Nancy Preston, Lorna K Fraser, Fliss EM Murtagh, Irene J Higginson, Matthew Maddocks
Background Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence, and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic.
-
Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall) medRxiv. Palliat. Med. Pub Date : 2021-03-29 Catherine Walshe, Ian Garner, Lesley Dunleavy, Nancy Preston, Andy Bradshaw, Rachel L Cripps, Sabrina Bajwah, Katherine E Sleeman, Mevhibe Hocaoglu, Matthew Maddocks, Fliss EM Murtagh, Adejoke O Oluyase, Lorna K Fraser, Irene J Higginson, on behalf of the CovPall study team
Background Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown.
-
Unwelcome memento mori or best clinical practice? Community end-of-life anticipatory medication prescribing practice: a mixed methods observational study medRxiv. Palliat. Med. Pub Date : 2021-03-01 Ben Bowers, Kristian Pollock, Stephen Barclay
Background Anticipatory medications are injectable drugs prescribed ahead of possible need for administration if distressing symptoms arise in the final days of life. Little is known about how they are prescribed in primary care.
-
Community end-of-life care during the COVID-19 pandemic: Initial findings of a UK primary care survey medRxiv. Palliat. Med. Pub Date : 2021-02-16 Sarah Mitchell, Phillip Oliver, Clare Gardiner, Helen Chapman, Dena Khan, Kirsty Boyd, Jeremy Dale, Stephen Barclay, Catriona Mayland
Background Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning.
-
Off-label use in Palliative Care – more common than expected. A retrospective chart review medRxiv. Palliat. Med. Pub Date : 2021-01-20 Vera Hagemann, Claudia Bausewein, Constanze Rémi
Objective Off-label drug use seems to be integral to palliative care pharmacotherapy. Balancing potential risks and benefits in the context of limited therapeutic options is challenging. To provide specific support for clinicians in dealing with off-label use, it is essential to understand off-label use in everyday clinical practice.
-
Family physicians supporting patients with palliative care needs within the Patient Medical Home in the community: An Appreciative Inquiry qualitative study medRxiv. Palliat. Med. Pub Date : 2021-01-06 Amy Tan, Ronald Spice, Aynharan Sinnarajah
Objectives Canadians want to live and die in their home communities. Unfortunately, Canada has the highest proportion of deaths in acute care facilities as compared to other developed nations. This study aims to identify the essential components required to best support patients and families with palliative care needs in their communities to inform system changes and empower family physicians (FPs)
-
The challenges of caring for people dying from COVID-19: a multinational, observational study of palliative and hospice services (CovPall) medRxiv. Palliat. Med. Pub Date : 2020-11-03 AO Oluyase, M Hocaoglu, R Cripps, M Maddocks, C Walshe, LK Fraser, N Preston, L Dunleavy, A Bradshaw, FEM Murtagh, S Bajwah, KE Sleeman, IJ Higginson, On behalf of the CovPall study team
Background Systematic data on the care of people dying with COVID-19 are scarce. We studied the response of and challenges for palliative care services during the COVID-19 pandemic.
-
‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multi-national survey (CovPall) medRxiv. Palliat. Med. Pub Date : 2020-11-03 Lesley Dunleavy, Nancy Preston, Sabrina Bajwah, Andy Bradshaw, Rachel Cripps, Lorna K Fraser, Matthew Maddocks, Mevhibe Hocaoglu, Fliss EM Murtagh, Adejoke Oluyase, Katherine E Sleeman, Irene Higginson, Catherine Walshe, on behalf of the CovPall study team
Background Specialist palliative care services have a key role in a whole system response to COVID-19. There is a need to understand service response to share good practice and prepare for future care.
-
Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services medRxiv. Palliat. Med. Pub Date : 2020-10-30 A Bradshaw, L. Dunleavy, C. Walshe, N. Preston, R. Cripps, M.B. Hocaoglu, S. Bajwah, M. Maddocks, A. Oluyase, K.E. Sleeman, I.J. Higginson, L.K. Fraser, F.E.M Murtagh, On behalf of the CovPall study team
Background During the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them.
-
Congruence of Health-related Quality of Life Assessment between Patient-Physician and Patient-Caregiver Dyads medRxiv. Palliat. Med. Pub Date : 2020-09-30 Chia-Chun Tang, Hsi Chen, Wei-Wen Wu, Jaw-Shiun Tsai
Background Exploring the congruence of health-related quality of life (HRQOL) evaluation provides valuable information regarding whether proxies can accurately reflect patient perceptions and the quality of symptom communication. It is particular important in advanced cancer population who experience poor HRQOL and have deteriorated ability to express their feeling. The main purpose of this study was
-
Digital Health Interventions in Palliative Care: A Systematic Meta-Review and Evidence Synthesis medRxiv. Palliat. Med. Pub Date : 2020-09-18 Anne M. Finucane, Hannah O’Donnell, Jean Lugton, Connie Swenson, Claudia Pagliari
Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This rigorous meta-review applied a structured search of 10 databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 unique publications. Most reviews
-
Early Palliative Care Intervention Helps with Decreased Length Of Stay And Cost Cutting In A Safety Net Hospital In The Central Valley Of California medRxiv. Palliat. Med. Pub Date : 2020-09-15 Soujanya Sodavarapu, Siamak M. Seraj, Gurinder Ghotra, Malkinder Singh, Nasim Khosravi, Kinnari Parikh, Syung Min Jung
Objective To determine if early palliative care intervention within two days of hospital admission affects the length of stay and cost savings.
-
Modelling Palliative and End of Life resource requirements during COVID-19: implications for quality care medRxiv. Palliat. Med. Pub Date : 2020-07-24 Daniel Chalk, Sara Robbins, Rohan Kandasamy, Kate Rush, Ajay Aggarwal, Richard Sullivan, Charlotte Chamberlain
Background There were between 84,891 and 113,139 all-cause excess deaths in the United States (US) from February 1st to 25th May 2020. These deaths are widely attributed directly and indirectly to the COVID-19 pandemic. This surge in death necessitates a matched health system response to relieve serious health related suffering at the end of life (EoL) and achieve a dignified death, through timely
-
Outcomes and factors influencing care decisions in life-threatening fetal and neonatal anomalies medRxiv. Palliat. Med. Pub Date : 2020-07-14 Esther J. Lee, Simone Stenekes, Michael Harlos
Objective A retrospective chart review was undertaken to describe the outcomes following the diagnosis of a life-threatening fetal and neonatal anomaly.
-
Neonatal death: supporting bereaved mothers medRxiv. Palliat. Med. Pub Date : 2020-07-14 Alia Embaireeg, Amal KA Ayed, Mariam Khader Ayed
Background Death of a child is a devastating experience for parents, owing to which parents may show dissatisfaction towards medical care or suffer from intense and prolonged grief. The objective of the present study was to explore the needs of bereaved mothers after the death of their infant.