Articles

Using a self-directed workbook to support advance care planning with long term care home residents

While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support...

Authors: Tamara Sussman, Sharon Kaasalainen, Jack Lawrence, Paulette V. Hunter, Valerie Bourgeois-Guerin and Michelle Howard

Young adults understanding and readiness to engage with palliative care: extending the reach of palliative care through a public health approach: a qualitative study

Moving palliative care from a solely clinical focus to a more population based and community orientated approach is the hallmark of a much advocated public health approach to palliative care. Young adults are ...

Authors: Anita Mallon, Felicity Hasson, Karen Casson, Paul Slater and Sonja McIlfatrick

Physicians’ decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015

Physicians’ decision-making for seriously ill patients with advanced dementia is of high importance, especially as the prevalence of dementia is rising rapidly, and includes many challenging ethical, medical a...

Authors: Saila Haapasalmi, Reetta P. Piili, Riina Metsänoja, Pirkko-Liisa I. Kellokumpu-Lehtinen and Juho T. Lehto

Context and mechanisms that enable implementation of specialist palliative care Needs Rounds in care homes: results from a qualitative interview study

Improving quality of palliative and end of life care in older people’s care homes is essential. Increasing numbers of people die in these settings, yet access to high quality palliative care is not routinely p...

Authors: Jane Koerner, Nikki Johnston, Juliane Samara, Wai-Man Liu, Michael Chapman and Liz Forbat

Medical Assistance in Dying in patients with advanced cancer and their caregivers: a mixed methods longitudinal study protocol

The legal criteria for medical assistance in dying (MAiD) for adults with a grievous and irremediable medical condition were established in Canada in 2016. There has been concern that potentially reversible st...

Authors: Madeline Li, Gilla K. Shapiro, Roberta Klein, Anne Barbeau, Anne Rydall, Jennifer A. H. Bell, Rinat Nissim, Sarah Hales, Camilla Zimmermann, Rebecca K. S. Wong and Gary Rodin

Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales.

Authors: Ishrat Islam, Annmarie Nelson, Mirella Longo and Anthony Byrne

Learning to care for the spirit of dying patients: the impact of spiritual care training in a hospice-setting

Patients approaching the end of their life do not experience their existential and spiritual needs being sufficiently met by the healthcare professionals responsible for their care. Research suggest that this ...

Authors: Wafie Hussein Chahrour, Niels Christian Hvidt, Elisabeth Assing Hvidt and Dorte Toudal Viftrup

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can suppo...

Authors: Grace Warner, Lisa Garland Baird, Brendan McCormack, Robin Urquhart, Beverley Lawson, Cheryl Tschupruk, Erin Christian, Lori Weeks, Kothai Kumanan and Tara Sampalli

Anticoagulation for patients with mechanical heart valves at the end of life: understanding clinician attitudes and improving decision making

Decisions regarding continuation or cessation of anticoagulation for patients with mechanical heart valves nearing the end of life represent a difficult balance of risks. The risk of suffering and disability t...

Authors: Jonathan Raby, Victoria Bradley and Nikant Sabharwal

Dignity of patients with palliative needs in the Middle East: an integrative review

Patients with palliative needs experience high psychological and symptom distress that may lead to hopelessness and impaired sense of dignity. Maintaining patient dignity or the quality of being valued is a co...

Authors: Silva Dakessian Sailian, Yakubu Salifu, Rima Saad and Nancy Preston

An integrative review to identify how nurses practicing in inpatient specialist palliative care units uphold the values of nursing

Caring for individuals and their families with a life-limiting, symptomatic illness and those who are dying has long been an integral role of palliative care nurses. Yet, over the last two decades, the special...

Authors: Sue Moran, Maria Bailey and Owen Doody

Use of antithrombotics at the end of life: an in-depth chart review study

Antithrombotics are frequently prescribed for patients with a limited life expectancy. In the last phase of life, when treatment is primarily focused on optimizing patients’ quality of life, the use of antithr...

Authors: Bregje A.A. Huisman, Eric C.T. Geijteman, Jimmy J. Arevalo, Marianne K. Dees, Lia van Zuylen, Karolina M. Szadek, Agnes van der Heide and Monique A.H. Steegers

Validation of the psychometric properties of the Malay advance care planning questionnaire

There is a growing interest among the developing countries on advance care planning (ACP) due to the reported benefits of planning ahead in the developed countries. Validated instruments in various languages h...

Authors: Mun Kit Lim, Pauline Siew Mei Lai, Pei Se Wong, Sajaratulnisah Othman and Fadzilah Hanum Mohd Mydin

Priorities and opportunities for palliative and end of life care in United Kingdom health policies: a national documentary analysis

Access to high-quality palliative care is inadequate for most people living and dying with serious illness. Policies aimed at optimising delivery of palliative and end of life care are an important mechanism t...

Authors: Katherine E. Sleeman, Anna Timms, Juliet Gillam, Janet E. Anderson, Richard Harding, Elizabeth L. Sampson and Catherine J. Evans

My mind is still mine: a self-portrait in a photography project for adolescents and young adults with cancer

This commentary describes the unusual self-portrait contributed by a 26-year-old receiving treatment for relapsing medulloblastoma to a photography project undertaken by a group of patients as part of the Yout...

Authors: Andrea Ferrari, Alice Patriccioli, Matteo Silva, Matteo Davide Bonvicini and Maura Massimino

Insights from a community-based palliative care course: a qualitative study

The vast majority of medical students have no exposure to clinical palliative care encounters, especially in the community. Medical schools should respond to current challenges and needs of health systems by g...

Authors: Tania Pastrana, Johannes Wüller, Simone Weyers and Eduardo Bruera

Case study analysis of end of life care development in the Chinese cultural context of Macao: a social movement perspective

The modern hospice movement is often recognised as a social movement. However, such understanding is primarily based on historic reflection and this approach has lacked theoretical exploration. There is a lack...

Authors: Kuai In Tam, Elaine Haycock-Stuart and Sarah J. Rhynas

The prevalence of perceived stigma and self-blame and their associations with depression, emotional well-being and social well-being among advanced cancer patients: evidence from the APPROACH cross-sectional study in Vietnam

There is very limited evidence on the existence of cancer-related perceived stigma and self-blame among patients with advanced cancer in Asia, and how they are associated with psychosocial outcomes. This study...

Authors: Nguyen Tuong Pham, Jia Jia Lee, Nhu Hiep Pham, Thi Do Quyen Phan, Khoa Tran, Hoai Bao Dang, Irene Teo, Chetna Malhotra, Eric A. Finkelstein and Semra Ozdemir

Health professionals’ perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study

End-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receiv...

Authors: Hannah J. Fairlamb and Fliss E. M. Murtagh

Symptoms, symptom relief and support in COVID-19 patients dying in hospitals during the first pandemic wave

At the time of the first wave of the COVID-19 pandemic in Sweden, little was known about how effective our regular end-of-life care strategies would be for patients dying from COVID-19 in hospitals. The aim of...

Authors: Lisa Martinsson, Jonas Bergström, Christel Hedman, Peter Strang and Staffan Lundström

Perceptions of healthcare professionals towards palliative care in internal medicine wards: a cross-sectional survey

The extension of palliative care services to meet the needs of patients with chronic non-malignant life-limiting conditions faces misconceptions amongst healthcare professionals. A study of prevailing percepti...

Authors: Jason Tay, Scott Compton, Gillian Phua, Qingyuan Zhuang, Shirlyn Neo, Guozhang Lee, Limin Wijaya, Min Chiam, Natalie Woong and Lalit Krishna

Developing an integrated model of community-based palliative care into the primary health care (PHC) for terminally ill cancer patients in Iran

Patients with cancer commonly experience pain and suffering at the end of life days. Community-based palliative care can improve the quality of life of terminally-ill cancer patients and provide them with a me...

Authors: Suzanne Hojjat-Assari, Maryam Rassouli, Maxwell Madani and Heshmatolah Heydari

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

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

NUrsing Homes End of Life care Program (NUHELP): developing a complex intervention

Nursing homes are likely to become increasingly important as end-of-life care facilities. Previous studies indicate that individuals residing in these facilities have a high prevalence of end-of-life symptoms ...

Authors: Emilio Mota-Romero, Ana Alejandra Esteban-Burgos, Daniel Puente-Fernández, María Paz García-Caro, Cesar Hueso-Montoro, Raquel Mercedes Herrero-Hahn and Rafael Montoya-Juárez

Facilitating advance care planning in the general practice setting for patients with a chronic, life-limiting illness: protocol for a phase-III cluster-randomized controlled trial and process evaluation of the ACP-GP intervention

Advance care planning (ACP), a process of communication about patients’ preferences for future medical care, should be initiated in a timely manner. Ideally situated for this initiation is the general practiti...

Authors: Julie Stevens, Peter Pype, Kim Eecloo, Luc Deliens, Koen Pardon and Aline De Vleminck

Brief Engagement and Acceptance Coaching for Hospice Settings (the BEACHeS study): results from a Phase I study of acceptability and initial effectiveness in people with non-curative cancer

Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot te...

Authors: Nicholas J. Hulbert-Williams, Sabrina F. Norwood, David Gillanders, Anne M. Finucane, Juliet Spiller, Jenny Strachan, Susan Millington, Joseph Kreft and Brooke Swash

Video decision support tool promoting values conversations in advanced care planning in cancer: protocol of a randomised controlled trial

Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and l...

Authors: Natasha Michael, Clare O’Callaghan, Ekavi Georgousopoulou, Adelaide Melia, Merlina Sulistio and David Kissane

Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study

To date, the establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic. Research is needed to gain insight into these services and to ensure the...

Authors: Franziska A. Herbst, Stephanie Stiel, Kathrin Damm, Lea de Jong, Jona T. Stahmeyer and Nils Schneider

Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This stud...

Authors: Femmy M. Bijnsdorp, Bregje D. Onwuteaka-Philipsen, Cécile R.L. Boot, Allard J. van der Beek, Hanna T. Klop and H. Roeline W. Pasman

Support received by family members before, at and after an ill person’s death

It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investi...

Authors: Anna O’Sullivan, Anette Alvariza, Joakim Öhlén and Cecilia Larsdotter

Documentation of older people’s end-of-life care in the context of specialised palliative care: a retrospective review of patient records

Palliative care focuses on identifying, from a holistic perspective, the needs of those experiencing problems associated with life-threatening illnesses. As older people approach the end of their lives, they c...

Authors: M. Sjöberg, A.-K. Edberg, B. H. Rasmussen and I. Beck

End-of-life care preferences among cancer patients in Southern Thailand: a university hospital-based cross-sectional survey

End-of-life care preferences may be highly individual, heterogenic, and variable according to culture and belief. This study aimed to explore preferences and factors associated with end-of-life care among Thai...

Authors: Jarurin Pitanupong and Sahawit Janmanee

Evidence on the economic value of end-of-life and palliative care interventions: a narrative review of reviews

As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the...

Authors: Xhyljeta Luta, Baptiste Ottino, Peter Hall, Joanna Bowden, Bee Wee, Joanne Droney, Julia Riley and Joachim Marti

Compassion fatigue and compassion satisfaction among palliative care health providers: a scoping review

Palliative care can be demanding and stressful for providers. There is increasing recognition in the literature of the impact of caregiving in palliative care settings, including compassion fatigue and compass...

Authors: Manal Hassan Baqeas, Jenny Davis and Beverley Copnell

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 Beernaert, 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