Articles

Knowledge of palliative care and preference of end of life care: a cross-sectional survey of residents in the Chinese socio-cultural background of Macao

Since the establishment of a hospice in the year 2000 and the development of a palliative care ward in 2019, there is no study examining public’s knowledge of palliative care, nor preference of end of life car...

Authors: Kuai In Tam, Sok Leng Che, Mingxia Zhu and Sok Man Leong

Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, ad...

Authors: Grace Meijuan Yang, J. Nicholas Dionne-Odom, Yi Han Foo, Ariel Hui Mei Chung, Nur Haidah Ahmad Kamal, Laurence Tan, Chou Chuen Yu, Le Mai Khanh, Audrey Rui Xuan Koh, Irene Teo, Sungwon Yoon and Marie Bakitas

Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chin...

Authors: Juanjuan Zhao, Liming You, Hongmei Tao and Frances Kam Yuet Wong

Can primary palliative care education change life-sustaining treatment intensity of older adults at the end of life? A retrospective study

Palliative care education has been carried out in some hospitals and palliative care has gradually developed in mainland China. However, the clinical research is sparse and whether primary palliative care educ...

Authors: Qian Liu, Mingzhao Qin, Jian Zhou, Hui Zheng, Weiping Liu and Qi Shen

A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known abo...

Authors: Tao Wang, Alex Molassiotis, Betty Pui Man Chung, Si-Lin Zheng, Hou-Qiang Huang and Jing-Yu (Benjamin) Tan

Current status of intensive end-of-life care in children with hematologic malignancy: a population-based study

Adult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited da...

Authors: Nobuyuki Yotani, Daisuke Shinjo, Motohiro Kato, Kimikazu Matsumoto, Kiyohide Fushimi and Yoshiyuki Kizawa

Development and implementation of a transmural palliative care consultation service: a multiple case study in the Netherlands

In the Netherlands, healthcare professionals attending patients in the last phase of life, can consult an expert palliative care team (PCT) in case of complex problems. There are two types of PCTs: regional PC...

Authors: Marijanne Engel, Arianne Stoppelenburg, Andrée van der Ark, Floor M. Bols, Johannis Bruggeman, Ellen C.J. Janssens-van Vliet, Johanna H. Kleingeld-van der Windt, Ingrid E. Pladdet, Angelique E.M.J. To-Baert, Lia van Zuylen and Agnes van der Heide

Views of patients with advanced disease and their relatives on participation in palliative care research

Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with ...

Authors: Karolina Vlckova, Kristyna Polakova, Anna Tuckova, Adam Houska and Martin Loucka

Frames and counter-frames giving meaning to palliative care and euthanasia in the Netherlands

Based on the case of palliative care and euthanasia in the Netherlands, this paper presents an analysis of frames and counter-frames used in the ongoing public debate about these two intertwined topics. Each (...

Authors: Baldwin Van Gorp, Gert Olthuis, Anneleen Vandekeybus and Jelle van Gurp

Exploring the relationship between spiritual well-being and death anxiety in patients with gynecological cancer: a cross-section study

In recent years, spiritual well-being has gradually gained the attention of health care providers in China, especially those in oncology departments, who have recognized the importance of improving spiritual w...

Authors: Yue Feng, Xingcan Liu, Tangwei Lin, Biru Luo, Qianqian Mou, Jianhua Ren and Jing Chen

Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic di...

Authors: Doris van der Smissen, Judith A. C. Rietjens, Lisette van Gemert-Pijnen, Sandra van Dulmen, Agnes van der Heide and Ida J. Korfage

Decision making in the end-of-life care of patients who are terminally ill with cancer – a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers

In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding en...

Authors: Angela Luna-Meza, Natalia Godoy-Casasbuenas, José Andrés Calvache, Eduardo Díaz-Amado, Fritz E. Gempeler Rueda, Olga Morales, Fabian Leal, Carlos Gómez-Restrepo and Esther de Vries

Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers

Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process ...

Authors: Tove Bylund-Grenklo, Dröfn Birgisdóttir, Kim Beenaert, Tommy Nyberg, Viktor Skokic, Jimmie Kristensson, Gunnar Steineck, Carl Johan Fürst and Ulrika Kreicbergs

Palliative Performance Scale and survival in patients with cancer and non-cancer diagnoses needing a palliative care consultation: a retrospective cohort study

Palliative Performance Scale (PPS) has been frequently used to estimate the survival time of palliative care patients. The objective was to determine the associations between the PPS and survival time among ca...

Authors: Patcharaporn Prompantakorn, Chaisiri Angkurawaranon, Kanokporn Pinyopornpanish, Lalita Chutarattanakul, Chanchanok Aramrat, Chanapat Pateekhum and Nisachol Dejkriengkraikul

Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study

Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Pa...

Authors: In Gyu Song, Seung Yeon Kwon, Yoon Jung Chang, Min Sun Kim, Sung Hoon Jeong, Seung Min Hahn, Kyu Tae Han, So-Jung Park and Jin Young Choi

Factors influencing nurses’ intention to work in the oncology specialty: multi-institutional cross-sectional study

Nursing care for terminally ill cancer patients is routinely provided by oncology nurses in Saudi Arabia. Shortages and retention of oncology nurses is an important concern for healthcare leaders.

Authors: Omar Alrasheedi, Timothy John Schultz and Gillian Harvey

Translation, cultural adaptation and validation of the Chinese version of the Carer Support Needs Assessment Tool for family caregivers of cancer patients receiving home-based hospice care

Family caregivers need to be supported in caring for patients at the end of life, but practical tools to assess their support needs have been missing in China. So this study aimed to culturally adapt and valid...

Authors: Sijia Zhou, Qianqian Zhao, Huimin Weng, Ning Wang, Xia Wu, Xinxin Li and Lili Zhang

Why is hospice care important? An exploration of its benefits for patients with terminal cancer

Palliative care has proven over time that it can help prolong life spans with the use of hospices. The literature reports that most patients with cancer are diagnosed in the later stages and since there is no ...

Authors: Maria Wajid, Eslavath Rajkumar, J. Romate, Allen Joshua George, R. Lakshmi and Srinagesh Simha

Factors influencing length of survival in ambulatory palliative care - a cross sectional study based on secondary data

Quality of life and patient self-determination are key elements in successful palliative care. To achieve these goals, a robust prediction of the remaining survival time is useful as it can provide patients an...

Authors: Johannes Just, Marie-Therese Schmitz, Ulrich Grabenhorst, Thomas Joist, Kirsten Horn, Bettina Engel and Klaus Weckbecker

The opinion of French pulmonologists and palliative care physicians on non-invasive ventilation during palliative sedation at end of life: a nationwide survey

Deciding to withdraw non-invasive ventilation (NIV) at end-of-life (EOL) in patients with chronic respiratory failure is a challenge. The European Association for Palliative Care recommends not maintaining art...

Authors: V. Guastella, G. Piwko, A. Greil, C. Lambert and A. Lautrette

A qualitative study on continuous deep sedation until death as an alternative to assisted suicide in Switzerland

According to the European Association for Palliative Care, decisions regarding palliative sedation should not be made in response to requests for assisted dying, such as euthanasia or assisted suicide. However...

Authors: Martyna Tomczyk, Nathalie Dieudonné-Rahm and Ralf J. Jox

Bereavement interventions to support informal caregivers in the intensive care unit: a systematic review

Informal caregivers of critically ill patients in intensive care unit (ICUs) experience negative psychological sequelae that worsen after death. We synthesized outcomes reported from ICU bereavement interventi...

Authors: Stephana J. Moss, Krista Wollny, Therese G. Poulin, Deborah J. Cook, Henry T. Stelfox, Amanda Roze des Ordons and Kirsten M. Fiest

Correction to: A meaning-centered spiritual care training program for hospice palliative care teams in South Korea: development and preliminary evaluation

Authors: Kyung-Ah Kang, Shin-Jeong Kim, Do-Bong Kim, Myung-Hee Park, Soo-Jin Yoon, Sung-Eun Choi, Young-Sim Choi and Su-Jin Koh

Development and evaluation of the Good Grief program for young people bereaved by familial cancer

Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in po...

Authors: Pandora Patterson, Fiona E. J. McDonald, Elizabeth Kelly-Dalgety, Bianca Lavorgna, Barbara L. Jones, Anna E. Sidis and Thomasin Powell

Changes in decision-making process for life-sustaining treatment in patients with advanced cancer after the life-sustaining treatment decisions-making act

Cancer is a leading cause of death in Korea. To protect the autonomy and dignity of terminally ill patients, the Life-Sustaining Treatment Decision-Making Act (LST-Act) came into full effect in Korea in Februa...

Authors: Hyeyeong Kim, Hyeon-Su Im, Kyong Og Lee, Young Joo Min, Jae-Cheol Jo, Yunsuk Choi, Yoo Jin Lee, Daseul Kang, Changyoung Kim, Su-Jin Koh and Jaekyung Cheon

Challenges and opportunities for spiritual care practice in hospices in a middle-income country

Spiritual care is a key component of palliative care, but it has been overlooked and understudied in low- and middle-income country contexts, especially in Africa. In this study we sought to establish what the...

Authors: Ronita Mahilall and Leslie Swartz

Palliative care in day-hospital for advanced cancer patients: a study protocol for a multicentre randomized controlled trial

Team-based and timely integrated palliative care is a gold standard of care in oncology, but issues concerning its optimal organization remain. Palliative Care in Day-Hospital (PCDH) could be one of the most e...

Authors: Laura Thery, Amélie Anota, Lorraine Waechter, Celine Laouisset, Timothee Marchal, Alexis Burnod, Elisabeth Angellier, Oum El Kheir Djoumakh, Clemence Thebaut, Anne Brédart, Sylvie Dolbeault, Jean-Christophe Mino and Carole Bouleuc

The impact of uncertainty on bereaved family’s experiences of care at the end of life: a thematic analysis of free text survey data

Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease ar...

Authors: Jackie Robinson, Caitlin Pilbeam, Hetty Goodwin, Deborah Raphael, Susan Waterworth and Merryn Gott

Continuity in palliative care – analysis of intersectoral palliative care based on routine data of a statutory health insurance

The goal of palliative care is to prevent and alleviate a suffering of incurable ill patients. A continuous intersectoral palliative care is important. The aim of this study is to analyse the continuity of pal...

Authors: Laura Rehner, Kilson Moon, Wolfgang Hoffmann and Neeltje van den Berg

Unmet needs related to the quality of life of advanced cancer patients in Korea: a qualitative study

It has recently been emphasized that the unmet needs of cancer patients should be evaluated more holistically, for example, by exploring caregivers’ perspectives and cross cultural differences. This study expl...

Authors: Jeehee Pyo, Minsu Ock, Mina Lee, Juhee Kim, Jaekyung Cheon, Juhee Cho, Jung Hye Kwon, Hyeyeoung Kim, Hyeon-Su Im, Young Joo Min and Su-Jin Koh

“It’s given me confidence”: a pragmatic qualitative evaluation exploring the perceived benefits of online end‐of‐life education on clinical care

Hospital admissions for end-of-life care are increasing exponentially across the world. Significant numbers of health professionals are now required to provide end-of-life care with minimal training. Many heal...

Authors: Deidre D Morgan, Caroline Litster, Megan Winsall, Kim Devery and Deb Rawlings

Validity and reliability of the Persian version of the nurse spiritual care therapeutics scale (NSCTS)

Dealing with the spiritual needs of patients has been recognized as one of the principles of holistic care in nursing. Therefore, it is necessary for nurses to deal with the spiritual issues of patients. Also,...

Authors: Fatemeh Merati-Fashi, Behnam Khaledi-Paveh, Hadis Mosafer and Abbas Ebadi

Hospice care providers experiences of grappling with medical assistance in dying in a hospice setting: a qualitative descriptive study

Rapid implementation of Medical Assistance in Dying (MAiD) across care settings has challenged providers and organizations, including hospices, to develop and implement new modes of practice. The aim of this s...

Authors: Shannon Freeman, Davina Banner and Valerie Ward

The hospice as a learning space: a death education intervention with a group of adolescents

The denial of death in Western society deprives young people of the tools to derive meaning from experiences of death and dying. Literature shows that death education may allow them to become familiar with thi...

Authors: Ines Testoni, Lorenza Palazzo, Lucia Ronconi, Stefania Donna, Paolo Francesco Cottone and Michael Alexander Wieser

An Australian Neuro-Palliative perspective on Huntington's disease: a case report

Huntington’s Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Aust...

Authors: Rajvi Shah, Sarah CM Lee, Rupert B Strasser and Christopher Grossman

Comparison of the health-related quality of life of end stage kidney disease patients on hemodialysis and non-hemodialysis management in Uganda

Health-related quality of life is recognized as a key outcome in chronic disease management, including kidney disease. With no national healthcare coverage for hemodialysis, Ugandan patients struggle to pay fo...

Authors: Peace Bagasha, Elizabeth Namukwaya, Mhoira Leng, Robert Kalyesubula, Edrisa Mutebi, Ronald Naitala, Elly Katabira and Mila Petrova

Psychosocial-spiritual interventions among Muslims undergoing treatment for cancer: an integrative review

Cancer is a global disease that affects all populations, including Muslims. Psychological and spiritual care of Muslim patients with cancer includes psychosocial and spiritual techniques that help to improve t...

Authors: Abdallah Abu Khait and Mark Lazenby

Nurses’ knowledge and attitudes towards palliative care and death: a learning intervention

In many countries, nurses are ill-prepared to provide care to patients with terminal illnesses. Limited education and training affect their ability to deliver proper palliative care. Only a few studies have ex...

Authors: Yanping Hao, Lixuan Zhan, Meiling Huang, Xianying Cui, Ying Zhou and En Xu

Short-form quality care questionnaire-palliative care has acceptable measurement properties in Brazilian cancer patients

Our objective was to perform the translation, cross-cultural adaptation, and validation of the Quality Care Questionnaire-Palliative Care (QCQ-PC) into Brazilian Portuguese for cancer patients in palliative ca...

Authors: Vinício dos Santos Barros, Daniela Bassi-Dibai, André Pontes-Silva, Laíla Silva Linhares Barros, Adriana Sousa Rêgo, Cid André Fidelis-de-Paula-Gomes and Almir Vieira Dibai-Filho

Attitudes and educational needs of emergency doctors providing palliative and end-of-life care in Hong Kong: a cross-sectional analysis based on a self-report study

Due to the ageing population in Hong Kong, the importance and need of palliative care and end-of-life (EOL) care are coming under the spotlight. The objectives of this study were to evaluate the attitudes of e...

Authors: Kwun Hang Wong, Li Chuan Marc Yang, Kam Wing Raymond Woo, Oi Fung Wong, Wing Yan Kwong, Choi Fung Tse, Shing Kit Tommy Lam, Hing Man Ma, Chau Hung Albert Lit, Hiu Fai Ho and Yau Ngai Shih

Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life

Legal issues are common in chronic illness. These include matters of daily life, such as problems with employment, finances and housing, where rights or entitlements are prescribed by law. They also include pl...

Authors: Helen Close, Kamal Sidhu, Hazel Genn, Jonathan Ling and Colette Hawkins

Effect of continual quality improvement of palliative care consultation teams by iterative, customer satisfaction survey-driven evaluation

Current consensus recognizes the benefits of early intervention in palliative care consultation teams (PCCTs). As consultants, we should now attempt to improve the quality of our teams by utilizing a method ma...

Authors: Noriyuki Kawabata and Mikio Nin

Opioid therapy vs. multimodal analgesia in head and neck Cancer (OPTIMAL-HN): study protocol for a randomized clinical trial

Radiation-induced mucositis (RIM) pain confers substantial morbidity for head and neck cancer (HNC) patients undergoing radiotherapy alone (RT) or chemoradiotherapy (CRT), often reducing treatment compliance. ...

Authors: Sondos Zayed, Pencilla Lang, Lucas C. Mendez, Nancy Read, Jinka Sathya, Varagur Venkatesan, Dwight E. Moulin, Andrew Warner and David A. Palma

Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study

Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of a...

Authors: Sonja McIlfatrick, Paul Slater, Esther Beck, Olufikayo Bamidele, Sharon McCloskey, Karen Carr, Deborah Muldrew, Lisa Hanna-Trainor and Felicity Hasson

Socioeconomy as a prognostic factor for location of death in Swedish palliative cancer patients

An important aspect of end-of-life care is the place of death. A majority of cancer patients prefer home death to hospital death. At the same time, the actual location of death is often against patient’s last-...

Authors: Jonas Nilsson, Georg Holgersson, Gustav Ullenhag, Malin Holmgren, Bertil Axelsson, Tobias Carlsson, Michael Bergqvist and Stefan Bergström

Enhanced home palliative care could reduce emergency department visits due to non-organic dyspnea among cancer patients: a retrospective cohort study

Dyspnea is a common trigger of emergency department visits among terminally ill and cancer patients. Frequent emergency department (ED) visits at the end of life are an indicator of poor-quality care. We exami...

Authors: Hua-Shui Hsu, Tai-Hsien Wu, Chin-Yu Lin, Ching-Chun Lin, Tsung-Po Chen and Wen-Yuan Lin

How well do documented goals-of-care discussions for patients with stage IV cancer reflect communication best practices?

Written clinical communication regarding patients’ disease understanding and values may facilitate goal-concordant care, yet little is known about the quality of electronic health record (EHR) documentation. W...

Authors: Natalie C. Ernecoff, Kathryn L. Wessell, William A. Wood, Gary S. Winzelberg, Frances A. Collichio and Laura C. Hanson

Validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) in Singapore

Measurement of patient-centred outcomes enables clinicians to focus on patient and family priorities and enables quality of palliative care to be assessed.

Authors: Victoria Jane En Long, Yin Bun Cheung, Debra Qu, Katherine Lim, Guozhang Lee, Alethea C. P. Yee, Ping Guo, Richard Harding and Grace Meijuan Yang

No difference in effects of ‘PACE steps to success’ palliative care program for nursing home residents with and without dementia: a pre-planned subgroup analysis of the seven-country PACE trial

‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the las...

Authors: Rose Miranda, Tinne Smets, Nele Van Den Noortgate, Jenny T. van der Steen, Luc Deliens, Sheila Payne, Katarzyna Szczerbińska, Sophie Pautex, Liesbeth Van Humbeeck, Giovanni Gambassi, Marika Kylänen and Lieve Van den Block

Inducing a sense of worthiness in patients: the basis of patient-centered palliative care for cancer patients in Iran

Patient-centered care is one of the main components in providing palliative care for cancer patients. This issue has been the subject of numerous studies and practices in nursing for many years. Few studies, h...

Authors: Mir Hossein Aghaei, Zohreh Vanaki and Eesa Mohammadi