Articles

Healthcare professionals’ perspectives of patient and family preferences of patient place of death: a qualitative study

Home death is one of the key performance indicators of the quality of palliative care service delivery. Such a measure has direct implications on everyone involved at the end of life of a dying patient, includ...

Authors: Manjusha K. Sathiananthan, Gregory B. Crawford and Jaklin Eliott

Implementing welfare technology in palliative homecare for patients with cancer: a qualitative study of health-care professionals’ experiences

Introducing welfare technology in home-based palliative care has been suggested to be beneficial for improving access to health care at home and enhancing patients’ feelings of security and safety. However, li...

Authors: Lina Oelschlägel, Alfhild Dihle, Vivi L. Christensen, Kristin Heggdal, Anne Moen, Jane Österlind and Simen A. Steindal

Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds

Recently immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. To explore this finding f...

Authors: Ayah Nayfeh, Christopher J. Yarnell, Craig Dale, Lesley Gotlib Conn, Brigette Hales, Tracey Das Gupta, Anita Chakraborty, Ruxandra Pinto, Ru Taggar and Robert Fowler

Health-related quality of life in patients with colorectal cancer in the palliative phase: a systematic review and meta-analysis

The occurrence of colorectal cancer has doubled over the last 50 years and many people are living with the disease in the palliative phase. Therefore, it is important that healthcare personnel have knowledge a...

Authors: Ida Røed Flyum, Seila Mahic, Ellen Karine Grov and Pål Joranger

Community palliative care services on addressing physical and psychosocial needs in people with advanced illness: a prospective cohort study

The integration of palliative care into primary health care has been advocated to improve its accessibility and the continuity of care. Recent studies on such an approach have mainly focused on health care cos...

Authors: Helen Yue-lai Chan, Carmen Ka-man Chung, Shawn Sze-chai Tam and Rita Suk-kuen Chow

Addressing challenges in information-provision: a qualitative study among oncologists and women with advanced breast cancer

There is a need for more insight into how to address challenges of information-provision for women with advanced breast cancer. We aimed to explore oncologists’ and patients’ views on (i) the challenges of inf...

Authors: Liesbeth M. van Vliet, Maartje C. Meijers, Sandra van Dulmen, Elsken van der Wall, Nicole Plum, Jacqueline Stouthard and Anneke L. Francke

“We don’t want to sedate him” - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we ...

Authors: Sophie Meesters, Bettina Grüne, Claudia Bausewein and Eva Schildmann

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and family caregivers.

Authors: Jose A Calvache, Socorro Moreno, Gillian Prue, Joanne Reid, Sam H Ahmedzai, Angelica Arango-Gutierrez, Liliana Ardila, Lucia I Arroyo and Esther de Vries

Nurse-led normalised advance care planning service in hospital and community health settings: a qualitative study

Advance Care Planning (ACP) by Registered Nurses (RNs) has been emerging. However, there is limited understanding about what RNs experience as they incorporate ACP into their practice. This study aimed to elic...

Authors: Se Ok Ohr, Peter Cleasby, Sarah Yeun-Sim Jeong and Tomiko Barrett

Documenting plans for care: advance care directives and the 7-step pathway in the acute care context

Advance care planning involves the discussion and documentation of an individual’s values and preferences to guide their future healthcare should they lose capacity to make or communicate treatment decisions. ...

Authors: Gregory Brian Crawford, Katherine Hodgetts, Teresa Burgess and Jaklin Eliott

Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study

Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we ...

Authors: Sanne P. C. van Oosterhout, Daisy J. M. Ermers, Floor K. Ploos van Amstel, Carla M. L. van Herpen, Yvonne Schoon, Marieke Perry, Maartje van Geel, Evelien J. M. Kuip and Yvonne Engels

Parental bereavement – impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review

Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, time...

Authors: Prachi Simran Vig, Jia Yin Lim, Randal Wei Liang Lee, Huixin Huang, Xiu Hui Tan, Wei Qiang Lim, Marie Bernadette Xin Yi Lim, Alexia Sze Inn Lee, Min Chiam, Crystal Lim, Vijayendra Ranjan Baral and Lalit Kumar Radha Krishna

Trends in specialized palliative care referrals at an oncology center from 2007 to 2019

Early referral to palliative care, at least 3 months before death, should be a standard of care in oncological practice. Real life data in this setting are invaluable since they provide a picture of everyday p...

Authors: Lucka Boltezar, Barbara Jezersek Novakovic and Maja Ebert Moltara

Evaluating the specialist palliative care clinical nurse specialist role in an acute hospital setting: a mixed methods sequential explanatory study

Special palliative care is provided in a range of settings including a patient’s home (their primary place of dwelling), a hospice in-patient unit, or an acute hospital. The aim of the study was to evaluate th...

Authors: Michael Connolly, Mary Ryder, Kate Frazer, Eileen Furlong, Teresa Plazo Escribano, Philip Larkin, Eileen Carruthers and Eileen McGuigan

Associations between the spiritual well-being (EORTC QLQ-SWB32) and quality of life (EORTC QLQ-C30) of patients receiving palliative care for cancer in Cyprus

Spiritual well-being is increasingly investigated in relation to patients’ perceived quality of life and is generally thought as having the potential to support patients with cancer who receive palliative care...

Authors: Maria Kyranou and Marianna Nicolaou

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected q...

Authors: Maria Norinder, Kristofer Årestedt, Susanne Lind, Lena Axelsson, Gunn Grande, Gail Ewing, Maja Holm, Joakim Öhlén, Inger Benkel and Anette Alvariza

Large differences in the organization of palliative care in nursing homes in six European countries: findings from the PACE cross-sectional study

To be able to provide high-quality palliative care, there need to be a number of organizational structures available in the nursing homes. It is unclear to what extent such structures are actually present in n...

Authors: E. Honinx, L. Van den Block, R. Piers, B. D. Onwuteaka-Philipsen, S. Payne, K. Szczerbińska, G. Gambassi, M. Kylänen, L. Deliens and T. Smets

Benefits, for patients with late stage chronic obstructive pulmonary disease, of being cared for in specialized palliative care compared to hospital. A nationwide register study

In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. Still, specialist palli...

Authors: Ingela Henoch, Ann Ekberg-Jansson, Claes-Göran Löfdahl and Peter Strang

Providing dignity therapy to patients with advanced cancer: a feasibility study within the setting of a hospital palliative care unit

Dignity is a basic principle of palliative care and is intrinsic in the daily practice of professionals assisting individuals with incurable diseases. Dignity Therapy (DT) is a short-term intervention aimed at...

Authors: Francesca Nunziante, Silvia Tanzi, Sara Alquati, Cristina Autelitano, Enrica Bedeschi, Elisabetta Bertocchi, Matilde Dragani, Davide Simonazzi, Elena Turola, Luca Braglia, Luciano Masini and Silvia Di Leo

Adaptation of the Australian Palliative Care Phase concept to the German palliative care context: a mixed-methods approach using cognitive interviews and cross-sectional data

Palliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate t...

Authors: Eva Lehmann, Farina Hodiamont, Mirjam Landmesser, Carina S. Knobloch, Friedemann Nauck, Christoph Ostgathe, Bettina Grüne and Claudia Bausewein

Use of palliative radiotherapy among patients with metastatic non-small-cell lung cancer in Puerto Rico

Palliative radiotherapy (RT) represents an important treatment opportunity for improving the quality of life in metastatic non-small cell lung cancer (NSCLC) patients through the management of symptoms within ...

Authors: Valerie Quiñones-Avila, Karen J. Ortiz-Ortiz, Ruth Ríos-Motta, Heriberto Marín-Centeno and Guillermo Tortolero-Luna

Cost-utility analysis of palliative care in patients with advanced cancer: a retrospective study

Aging population and other factors have led to a rapid rise in cancer incidence in China. However, under the influence of traditional perception of diseases, deaths and economic factors, many patients who are ...

Authors: Hao Wu, Ping Lin, Shujuan Yang, Wei Zhang and Wenjuan Tao

Divergent patterns of confrontation with death using the Anticipated Farewell to Existence Questionnaire (AFEQT): a cross-sectional comparative study of four samples with increasing proximity to death

Based on the concept of “Daseinsverabschiedung”, an anthropological theory of “Anticipated Farewell to Existence” (AFE) was suggested on the basis of six grounding dimensions: selfhood, interpersonality, temporal...

Authors: Juan Valdés-Stauber, Ursula Stabenow, Jakob Böttinger, Sarah Kramer and Reinhold Kilian

Palliative care providers’ use of digital health and perspectives on technological innovation: a national study

While the need for digital health capability and technological innovation in palliative care services is growing rapidly, relatively little is known about the current uptake and views of individual palliative ...

Authors: Jason Mills, Jennifer Fox, Raechel Damarell, Jennifer Tieman and Patsy Yates

Advance care planning preferences in Chinese nursing home residents: results from two cross-sectional studies in Hong Kong and Taiwan

The proportion of hospital deaths has declined in the past few decades, while the proportions of nursing home deaths have increased. This trend of increasing deaths in long-term care facilities underlines the ...

Authors: Xinyi Xu, Shu-Wen Tu and Chia-Chin Lin

Advance care planning conversations in primary care: a quality improvement project using the Serious Illness Care Program

Advance care planning (ACP) conversations are associated with improved end-of-life healthcare outcomes and patients want to engage in ACP with their healthcare providers. Despite this, ACP conversations rarely...

Authors: Abe Hafid, Michelle Howard, Dale Guenter, Dawn Elston, Shireen Fikree, Erin Gallagher, Samantha Winemaker and Heather Waters

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