Response to “Hyoscine butylbromide for the management of death rattle: sooner rather than later.”
With great interest we read the article “Hyoscine Butylbromide for the Management of Death Rattle: Sooner Rather Than Later” by Mercadante et al. (1) The authors concluded that the prophylactic use of hyoscine butylbromide, an anticholinergic drug, is an efficient method to prevent death rattle in dying patients with a reduced level o f consciousness. The striking study results may be a starting point to change the current practice of treating death rattle. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 17, 2019 Category: Palliative Care Authors: H.J. van Esch, E.C.T. Geijteman, C.C.D. van der Rijt Source Type: research

Validity and Reliability of the Decision Regret Scale in Cancer Patients Receiving Adjuvant Chemotherapy
Decisional regret is an indicator of satisfaction with the treatment decision and can help to identify those patients who need more support and evaluate the efficacy of decision support interventions. The objetives of this study are, 1) to evaluate the psychometric properties of the Decision Regret Scale and 2) to analyze the moderating effect of psychological distress on functional status and regret in patients with cancer following adjuvancy. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 10, 2019 Category: Palliative Care Authors: Caterina Calderon, Pere Joan Ferrando, Urbano Lorenzo-Seva, Oliver Higuera, Teresa Ramon y Cajal, Jacobo Rogado, Margarida Mut-Lloret, Alejandra Rodriguez-Capote, Carlos Jara, Paula Jimenez-Fonseca Source Type: research

Consensus in Symptom Clusters Identified Using the Ratings of Occurrence, Severity, and Distress in Newly diagnosed Acute Myeloid Leukemia Patients Undergoing Induction Therapy
One of the open questions in symptom cluster (SC) research is that the numbers and types of SCs vary based on the multiple dimensions of the symptoms experienced used for SC identification. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 10, 2019 Category: Palliative Care Authors: Dong-mei Lin, Xi-xi Yin, Ning Wang, Wei Zheng, Yan-ping Wen, Li-min Meng, Li-li Zhang Source Type: research

Breast Cancer Patients Preferences For Truth Vs Hope Is Dynamic And Change During Late Lines of Palliative Chemotherapy
Women with metastatic breast cancer often receive many lines of palliative chemotherapy, which might be beneficial but also harmful. Still, little is known about the patients ’ perception of the patient-doctor communication regarding late lines of non-curative treatment. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 10, 2019 Category: Palliative Care Authors: Peter Strang, Jenny Bergqvist Source Type: research

Agreement between Breathlessness Severity and Unpleasantness in People with Chronic Breathlessness: A Longitudinal Clinical Study
Chronic breathlessness is a cardinal symptom in cardiopulmonary disease where both overall intensity or severity (S) and unpleasantness (U) are commonly quantified. We aimed to evaluate agreement between breathlessness severity and unpleasantness over eight days in patients with chronic breathlessness. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 9, 2019 Category: Palliative Care Authors: Magnus Ekstr öm, Marie Williams, Miriam J. Johnson, Chao Huang, David C. Currow Tags: Original Article Source Type: research

An Individualized, Interactive Intervention Promotes Terminally Ill Cancer Patients ’ Prognostic Awareness and Reduces Cardiopulmonary Resuscitation Received in the Last Month of Life: Secondary Analysis of a Randomized Clinical Trial
Half of advanced cancer patients do not have accurate prognostic awareness (PA). However, few randomized clinical trials (RCTs) have focused on facilitating patients ’ PA to reduce their life-sustaining treatments (LSTs) at end of life (EOL). To address these issues, we conducted a double-blinded RCT on terminally ill cancer patients. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 9, 2019 Category: Palliative Care Authors: Chen Hsiu Chen, Jen-Shi Chen, Fur-Hsing Wen, Wen-Cheng Chang, Wen-Chi Chou, Chia-Hsun Hsieh, Ming-Mo Hou, Siew Tzuh Tang Source Type: research

PC-FACS: January 2, 2019
Effects of Oxytocin (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 9, 2019 Category: Palliative Care Authors: Andie Bernard Source Type: research

Hearing Loss: Effect on Hospice and Palliative Care through the Eyes of Practitioners
Discussions regarding values and goals of care are central to providing quality palliative care. An inability to hear during these sensitive discussions may significantly impair the quality of care provided yet hearing loss (HL) is not formally addressed in these settings nor in programs designed to assist practitioners gain advanced communication skills. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 7, 2019 Category: Palliative Care Authors: Margaret I. Wallhagen, Christine S. Ritchie, Alexander K. Smith Source Type: research

Patients ’ Autonomy at the End of Life: A critical review
The predominating definition of autonomy as a capacity to make an independent rational choice may not be suitable for patients in palliative care. Therefrom arises the actual need for more contextualized perspectives on autonomy to promote the quality of life and satisfaction with care of terminally ill patients. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 3, 2019 Category: Palliative Care Authors: Adam Houska, Martin Lou čka Source Type: research

Risk of unplanned hospital encounters in patients treated with radiotherapy for head and neck squamous cell carcinoma
Radiotherapy is highly effective for treating squamous cell carcinoma of the head and neck but is often associated with significant toxicities and severe morbidity. Unplanned emergency department (ED) visits and hospitalizations are common during treatment and come with a substantial financial and health burden as well as the potential for impaired long-term outcomes due to treatment disruption. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 2, 2019 Category: Palliative Care Authors: Zachary R. Moore, Nhat-Long Pham, Jennifer Lobo Shah, Lucien Nedzi, Baran D. Sumer, Andrew Day, Saad A. Khan, David J. Sher Source Type: research

Examining Age Inequalities in Operationalized Components of Advance Care Planning: Truncation of the ACP Process with Age
Opportunities for patients to receive unnecessary, costly and potentially harmful care near the end-of-life abound. Advance care planning (ACP) can help to make this vulnerable period better for patients, caregivers and providers. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - January 2, 2019 Category: Palliative Care Authors: Laura C. Prater, Thomas Wickizer, Seuli Bose-Brill Source Type: research

Predatory Open-Access Publishing in Palliative and Supportive Care
Predatory publishing is commonly defined as an exploitative, fraudulent, open-access model that applies charges to authors without providing proper editorial services, characteristic of legitimate journals.1 This phenomenon is universally considered as one of the most serious threats to scientific community. To enhance awareness among scholars and clinicians, predatory publishing has been surveyed in several biomedical fields, such as neuroscience, orthopedics, rehabilitation, and anesthesiology. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 27, 2018 Category: Palliative Care Authors: Andrea Cortegiani, Eugenio Garofalo, Andrea Bruni, Filippo Sanfilippo, Federico Longhini Tags: Letter Source Type: research

A life or ‘good death’ situation? A worldwide ecological study of the national contexts of countries which have and have not implemented palliative care
Palliative Care advocates argue that service implementation is feasible in all settings. Yet, services have developed patchily in low and middle-income settings. Beyond Human Development Index indicators, there has been limited engagement with the broader development challenges facing nations tasked with implementing palliative care. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 27, 2018 Category: Palliative Care Authors: Joseph Clark, Amy Barnes, Mike Campbell, Clare Gardiner Source Type: research

Spirituality in Aotearoa New Zealand: personal reflections from a spirituality in healthcare researcher
Spirituality is about what is of utmost value, it is a values lens that asks ‘what really matters most to me, my family, our community, our country and our world’. This personal reflection comes from a New Zealand academic who works in the spirituality and healthcare research field. While largely biographical, this reflection offers some insight into the New Zealand cont ext and this emergent field. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 26, 2018 Category: Palliative Care Authors: Richard Egan Source Type: research

Attitudes of the General Public, Cancer Patients, Family Caregivers, and Physicians toward Advance Care Planning: A Nationwide Survey Prior to the Enforcement of the Life-Sustaining Treatment Decision-Making Act
To respect a patient ’s wish for end-of-life care, “the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life” was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 26, 2018 Category: Palliative Care Authors: Hye Yoon Park, Young Ae Kim, Jin-Ah Sim, Jihye Lee, Hyewon Ryu, Jung Lim Lee, Chi Hoon Maeng, Jung Hye Kwon, Yu Jung Kim, Eun Mi Nam, Hyun-Jeong Shim, Eun-Kee Song, Kyung Hae Jung, Eun Joo Kang, Jung Hun Kang, Young Ho Yun Tags: Original Article Source Type: research

Behaviors indicative of pain in brain-injured adult patients with different levels of consciousness in the intensive care unit
Many brain-injured patients are unable to self-report their pain during their hospitalization in the intensive care unit (ICU), and existing behavioral pain scales may not be well suited. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 26, 2018 Category: Palliative Care Authors: C éline Gélinas, Madalina Boitor, Kathleen A. Puntillo, Caroline Arbour, Jane Topolovec-Vranic, Michael D. Cusimano, Manon Choinière, David L. Streiner Tags: Original Article Source Type: research

Factors that Hinder and Facilitate Cancer Patients ’ Knowledge About Pain Management- a qualitative study
Pain management education may improve pain control for some patients, while individual differences exist. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 26, 2018 Category: Palliative Care Authors: Mirjam Ekstedt, Tone Rust øen Tags: Original Article Source Type: research

“No one wants to die alone”: Incarcerated patients’ knowledge and attitudes about early medical release
Deaths among incarcerated individuals have steadily increased in the United States, exceeding 5,000 in 2014. Nearly every state has a policy to allow patients with serious life-limiting illness to apply for release from prison or jail to die in the community ( “early medical release”). Although studies show these policies are rarely used, patient-level barriers to their use are unknown. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 26, 2018 Category: Palliative Care Authors: Alexa Kanbergs, Cyrus Ahalt, Irena Stijacic Cenzer, R. Sean Morrison, Brie A. Williams Tags: Brief Report Source Type: research

Editorial Board
(Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 25, 2018 Category: Palliative Care Source Type: research

Table of Contents
(Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 25, 2018 Category: Palliative Care Source Type: research

End-of-Life Culture Change Practices in U.S. Nursing Homes in 2016/2017
The nursing home (NH) culture change (CC) movement, which emphasizes person-centered care, is particularly relevant to meeting the unique needs of residents near the end of life. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 19, 2018 Category: Palliative Care Authors: Margot L. Schwartz, Julie C. Lima, Melissa A. Clark, Susan C. Miller Tags: Original Article Source Type: research

Safe and Appropriate Use of Methadone in Hospice and Palliative Care: Expert Consensus White Paper
Methadone has several unique characteristics that make it an attractive option for pain relief in serious illness, but the safety of methadone has been called into question after reports of a disproportionate increase in opioid-induced deaths in recent years. The American Pain Society (APS), College on Problems of Drug Dependence, and the Heart Rhythm Society collaborated to issue guidelines on best practices to maximize methadone safety and efficacy, but guidelines for the end-of-life scenario have not yet been developed. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 19, 2018 Category: Palliative Care Authors: Mary Lynn McPherson, Kathryn A. Walker, Mellar P. Davis, Eduardo Bruera, Akhila Reddy, Judith Paice, Kasey Malotte, Dawn Kashelle Lockman, Charles Wellman, Shelley Salpeter, Nina M. Bemben, James B. Ray, Bernard J. Lapointe, Roger Chou Source Type: research

End-of-Life Culture Change Practices in U.S. Nursing Homes in 2016 / 2017
The Nursing Home (NH) culture change (CC) movement, which emphasizes person-centered care, is particularly relevant to meeting the unique needs of residents near the end-of-life (EOL). (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 19, 2018 Category: Palliative Care Authors: Margot L. Schwartz, Julie C. Lima, Melissa A. Clark, Susan C. Miller Tags: Original article Source Type: research

Mechanical thrombectomy for Trousseau syndrome in a terminally ill cancer patient
Trousseau syndrome was first described by Armand Trousseau in 1865 and is characterized by hypercoagulation resulting from malignant tumors. This complication can markedly impact quality of life (QOL). This is the first report of a terminally ill patient who developed large-vessel occlusion stroke from Trousseau syndrome and underwent mechanical thrombectomy. A 75-year-old woman presented with stage IV ovarian cancer. Goals of care were transitioned to palliative care. The patient was hospitalized with vertebral compression fracture, and suddenly developed right hemiparesis and total aphasia during admission. (Source: Jour...
Source: Journal of Pain and Symptom Management - December 18, 2018 Category: Palliative Care Authors: Naoto Kuroda, Hisaya Hiramatsu, Masanori Mori, Tokutaro Tanaka Tags: Palliative Care Rounds Source Type: research

Advance directives, medical conditions, and preferences for end-of-life care among physicians: 12-year follow-up of the Johns Hopkins Precursors Study
Stability of preferences for life-sustaining treatment may vary depending on personal characteristics. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 18, 2018 Category: Palliative Care Authors: Joseph J. Gallo, Martha Abshire, Seungyoung Hwang, Marie T. Nolan Tags: Original Article Source Type: research

Single-Subject Designs and Practice-Based Research in Palliative Care: A Letter to the Editor
Randomized controlled trials (RCTs) have advanced pain and symptom management in the context of chronic illnesses and are regarded as the ideal designs to guard against threats to internal validity. These designs also enable researchers to obtain unbiased estimates of intervention effects compared to control conditions. However, overreliance on RCTs may stifle research progress if resources are limited, clinically meaningful differences are small, or participants differ from those who do not consent, are excluded, or leave the study before completion. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 14, 2018 Category: Palliative Care Authors: James Gerhart, Dennis Hand, Michael Hoerger, Sean O'Mahony Tags: Letter Source Type: research

Single Subject Designs and Practice-Based Research in Palliative Care: A Letter to the Editor
Randomized controlled trials (RCTs) have advanced pain and symptom management in the context of chronic illnesses, and are regarded as the ideal designs to guard against threats to internal validity. These designs also enable researchers to obtain unbiased estimates of intervention effects compared to control conditions. However, overreliance on RCTs may stifle research progress if resources are limited, clinically meaningful differences are small, or participants differ from those who do not consent, are excluded, or leave the study prior to completion. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 14, 2018 Category: Palliative Care Authors: James Gerhart, Dennis Hand, Michael Hoerger, Sean O'Mahony Source Type: research

Palliative Care Consultation Before Left Ventricular Assist Device Implantation
In a recent article published in the Journal of Pain and Symptom Management, Chuzi et al. 1 report on palliative care (PC) consultations prior to left ventricular assist devices (LVAD) implantation. The authors conclude that a one-time PC consultation immediately preimplantation is insufficient to complete preparedness planning and to delineate patients ’ preferences and goals. The authors pointed out several reasons for this finding. The first is that PC consultations were offered acutely prior to surgery. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 13, 2018 Category: Palliative Care Authors: Shunichi Nakagawa, Craig D. Blinderman Source Type: research

Authors ’ Response
It is with great enthusiasm that we read the letter written by Nakagawa and Blinderman in response to our study "Pre-Ventricular Assist Device Palliative Care Consultation: A Qualitative Analysis." Our study concluded that one-time palliative care (PC) consultations prior to implantation of destination-therapy ventricular assist device do not lead to completion of preparedness planning or even general palliative care assessment at our institution. We suggested a number of potential explanations for this finding, including the short time between PC consultation and surgery, a lack of consensus among the PC and hea...
Source: Journal of Pain and Symptom Management - December 13, 2018 Category: Palliative Care Authors: Sarah Chuzi, Kathleen L. Grady, Adeboye Ogunseitan, Eytan Szmuilowicz, Jane E. Wilcox Source Type: research

Pc-facs
Rojewska E, Wawrzczak-Bargiela A, Szucs E, et al. Alterations in the activity of spinal and thalamic opioid systems in a mice neuropathic pain model. Neuroscience. 2018;390:293-302. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 13, 2018 Category: Palliative Care Authors: Andie Bernard Source Type: research

Comparison of fatigue, pain and depression in patients with advanced kidney disease and cancer – symptom burden and clusters
While symptom clusters have been studied in the context of cancer, few data exist in chronic and end stage kidney disease (CKD/ESKD) patients. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 13, 2018 Category: Palliative Care Authors: Manisha Jhamb, Khaled Abdel-Kader, Jonathan Yabes, Yisi Wang, Steven D. Weisbord, Mark Unruh, Jennifer L. Steel Source Type: research

A scoping review to map empirical evidence regarding key domains and questions in the clinical pathway of delirium in palliative care
Based on the clinical care pathway of delirium in palliative care (PC), a published analytic framework (AF) formulated research questions in key domains and recommended a scoping review to identify evidence gaps. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 11, 2018 Category: Palliative Care Authors: Peter G. Lawlor, Nicole A. Rutkowski, Alistair R. MacDonald, Mohammed T. Ansari, Lindsey Sikora, Franco Momoli, Salmaan Kanji, David K. Wright, Erin Rosenberg, Annmarie Hosie, Jose L. Pereira, David Meagher, Jill Rice, John Scott, Shirley H. Bush Tags: Original Article Source Type: research

Relationships between Financial Toxicity and Symptom Burden in Cancer Survivors: A Systematic Review
Financial toxicity (FT) is used to describe the financial distress/hardship associated with cancer and its treatment. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 11, 2018 Category: Palliative Care Authors: Raymond Javan Chan, Louisa G. Gordon, Chia Jie Tan, Alexandre Chan, Natalie K. Bradford, Patsy Yates, Oluwaseyifunmi Andi Agbejule, Christine Miaskowski Source Type: research

Difference in opinions about continuous deep sedation among cancer patients, bereaved families, and physicians.
Despite recent advances in palliative medicine, some symptoms are refractory to intensive palliative care, and then palliative sedation therapy is sometimes performed 1, 2. Continuous deep sedation until death (CDS) is regarded as one type of palliative sedation therapy, and it has recently become a focus of intense debate 3-8. While dying in one ’s sleep is regarded as one type of good death in some cultures 9, CDS may be labeled as a continuum of euthanasia, especially when performed for patients with relatively longer predicted survival 3-8, 10. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 5, 2018 Category: Palliative Care Authors: Tatsuya Morita, Daisuke Kiuchi, Masayuki Ikenaga, Hirofumi Abo, Sayaka Maeda, Maho Aoyama, Takuya Shinjo, Yoshiyuki Kizawa, Satoru Tsuneto, Mitsunori Miyashita Source Type: research

Spiritual Experiences of Adults with Advanced Cancer in Outpatient Clinical Settings
Adults who have advanced cancer experience distress, and many use religion and spirituality to cope. Research on the spiritual experiences of advanced cancer patients will help guide the provision of high-quality spiritual care. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - December 5, 2018 Category: Palliative Care Authors: Saneta Maiko, Shelley A. Johns, Paul R. Helft, James E. Slaven, Ann H. Cottingham, Alexia M. Torke Source Type: research

A Comprehensive Approach to Palliative Care Ethics
The subtitle of this book ( “A Complete Guide”) is a bold claim, but one upon which the author delivers. In excess of 500 pages, this volume is indeed “comprehensive.” The book is divided into five sections and 19 chapters. In most chapters, a case study is presented at the beginning, and at the end, the reader is brou ght back to the case for further analysis. This is followed by a list of key points with an up-to-date and comprehensive list of references. The target audience comprises “professionals already in the field who seek deeper grounding in the clinical dilemmas specific to palliativ...
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Ben A. Rich Tags: Book Review Source Type: research

Volunteer Involvement in the Organisation of Palliative Care: Results from a Large-scale Survey of Healthcare Organisations in Flanders and Brussels
Aging populations increasingly face chronic and terminal illnesses, emphasising the importance of palliative care and quality of life for terminally ill people. Facing resource constraints in professional healthcare, some governments expect informal caregivers like volunteers to assume a greater share of care provision. Volunteers are present in palliative care and perform many roles, from administration to providing companionship. However, it is unknown how involved they are in the organisation of care and how healthcare organisations appraise their involvement. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Steven Vanderstichelen, Joachim Cohen, Yanna Van Wesemael, Luc Deliens, Kenneth Chambaere Tags: Research FORA Source Type: research

The Involvement of Cancer Patients in the Four Stages of Decision-making in Continuous Sedation Until Death
Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Lenzo Robijn, Jane Seymour, Luc Deliens, Ida Korfage, Jayne Brown, Peter Pype, Agnes van der Heide, Kenneth Chambaere, Judith Rietjens Source Type: research

Peer-facilitated Public Sessions as a Strategy to Increase Engagement in Advance Care Planning in British Columbia
Advance Care Planning (ACP) is a process whereby people reflect upon and share their values, beliefs and wishes for future healthcare with family, friends and healthcare providers. Knowing this information informs decision-making about the treatment and care options right for them. Despite many benefits, public awareness of, and engagement in, ACP is low in British Columbia (BC). As one approach aiming to address public ACP engagement, the BC Centre for Palliative Care partnered with community organisations from across the province to spread a community-delivered public education model; peer-facilitated public ACP sessions...
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Rachel Carter, Eman Hassan, Doris Barwich, Jennifer Kryworuchko, Lawrence Mroz, Shimae Soheilipour, Richard Sawatzky, Jessica Simon, Arminee Kazanjian Source Type: research

Caring for a Child with a Complex Chronic Condition: Parent-Reported Burden and Quality of Life
Parents caring for children with complex chronic conditions (CCC) face higher care-giving responsibilities, which may negatively impact caregiver burden and quality of life (QOL). The primary goal of this analysis was to measure burden of illness/QOL for parents caring for a child with CCC, and to examine their association with sociodemographic characteristics. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Andrea Postier, Alison Kolste, Craig Schulz, David Watson, Nikki Braaten, Kris Catrine, Stefan Friedrichsdorf Tags: Workshops and Proffered Papers Source Type: research

Exploring Fathers' Experiences of Living With a Child Who Has a Life Shortening Condition. A Phenomenological Approach
Care for a child with a life shortening condition (LSC)/life threatening condition (LTC) is usually carried out in the family home by parents. It may involve undertaking very complex care, and as such affects the whole family. There is little research focusing on the experiences and needs of fathers of a child with LSC/LTC. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Nicky Bridges Source Type: research

How Do Family Caregivers Prepare for Death and Bereavement in Dementia? A Concept Analysis
Family caregivers (CG) in dementia often feel unprepared for end of life (EOL). Death preparedness is not well-understood, therefore the purpose of this study was to: (a) define and identify attributes of CG preparedness for death in dementia; and (b) provide recommendations for the assessment and promotion of preparedness. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Pamela Durepos, Sharon Kaasalainen, Jenny Ploeg, Tamara Sussman, Noori Akhtar-Danesh Source Type: research

Understanding the Last Days and Hours of Life Using Narrative Inquiry: Stories of Family and Friends
This presentation reports findings from a qualitative research study that aims to better understand peoples' experiences of the last days and hours of life. Dying people and their families often express a great deal of uncertainty about this time. People worry about what the dying process will actually look like, and what will happen to them and to their loved ones. For this project, friends and families of people having died within the last five years were invited to share their experiences. The project was designed to generate narrative evidence that can speak back directly to the uncertainty that characterizes the last ...
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Kathleen Charlebois, David Kenneth Wright, Susan Law Source Type: research

The Effect of a Dharma Creative Art Therapy Program Among Cancer Patients Receiving Palliative Care
This study was a quasi-experimental research with a pretest posttest control group designed to investigate the effect of Dharma Creative Art Therapy Program on the quality of life among cancer patients receiving palliative care. The participants included female and male cancer patients receiving palliative care at Arokayasal Kampramong Temple (AKT), Sakon Nakhon Province, Thailand. It is a hospice care center that uses Thai traditional medicine and complementary medicine. Eighteen participants were in the control group and 15 participants in the experimental group. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Sureeporn Thanasilp, Kotchakorn Voraakhom, Prim Pisolayabutra, Rattana Panriansaen, Wilailuck Tantitrakul, Lanchasak Akkaayagorn Source Type: research

Who Consults a New Neuropalliative Care Service?
The Montreal Neurologic Hospital is a tertiary, university-affiliated institution which opened its doors in 1934 to care for patients with neurologic illness and to advance our understanding of neurologic diseases. It was physically connected to a general hospital, the Royal Victoria, and shared service with its palliative care team until it moved to a new site in 2015. With the general hospital moving and the nascent development of neuropalliative care as a subspecialty, a new model of service delivery was created in 2016. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Jeff A. Hall, Justine Gauthier Source Type: research

Palliative Care for Underserved Populations in Australia: Homeless Persons A Discourse-Historical Approach
This paper aims to report on the analysis of discourse used in palliative care and homelessness talk and text. Over 105,000 people identified themselves as homeless in the 2011 Australian census; however recent studies suggest that the true numbers of homeless are much higher. Data on housing and homelessness from the 2016 Australian census is due for release in early 2018. Homeless persons experience increased incidences of chronic illness, communicable diseases, injury and trauma and die earlier than the general population, but access health services less. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Katrina Recoche, Margaret O'Connor, Rosemary Clerehan Source Type: research

Learning From Experiences of Feeling Heard: A Qualitative Study of Hospice Palliative Care Volunteers
Listening is central to the role of volunteers. The purpose of this study was to explore how different experiences of being listened to and feeling heard (or not) can be formative and influential for hospice volunteers in how they listen to others. What kinds of experiences have hospice volunteers had of receiving listening from others across their lifespan? What is the quality of those experiences? And how might these experiences have motivated and shaped their own listening styles, affected their capacity for listening, and influenced their approach to care in their roles as hospice palliative care volunteers? (Source: J...
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Robert Mundle Source Type: research

‘Nothing in the World Can Serve Those People Like Palliative Care': Results from a Qualitative Study on Palliative Care for Refugees in Jordan and Rwanda
For each case study, in-depth, semi-structured interviews exploring experiences, needs, challenges, and possibilities for palliative care were conducted with refugees dealing with life-limiting or terminal illnesses in camp and urban settings in Jordan and in Rwanda. Special ethics consideration was incorporated into the research methods, remaining sensitive to refugees' compounded vulnerabilities of illness, displacement, and exposure to conflict. Along with interviews with refugees, local and international humanitarian healthcare providers were interviewed at both sites to explore moral experiences, barriers and facilita...
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Sonya de Laat, Olive Wahoush, Wejdan Khater, Emmanuel Musoni, Ibraheem Abu-Siam, Kevin Bezanson, Elysee Nouvet, Matthew Hunt, Carrie Bernard, Rachel Yantzi, Laurie Elit, Lynda Redwood-Campbell, Ross Upshur, Lisa Schwartz Source Type: research

Palliative Care Matters: Commitment to Action Toward an Integrated Palliative Care Strategy for Canada
Palliative Care Matters (PCM) is a collaboration intended to develop a consensus toward optimal palliative care for all Canadians. An inaugural steering committee of 14 national stakeholders included government representatives, healthcare providers, non-governmental organizations, and patient-family advocates. The collective impact framework (CIF) was employed to identify 30 additional stakeholders from across Canada to develop an action plan for an integrated palliative care strategy (IPCS). (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Konrad Fassbender, Wonita Janzen, Michelle Sims, Carleen Brenneis, Karen Macmillan Source Type: research

Exploring Awareness of Spirituality in Physicians Working in an Inpatient Specialist Palliative Care Unit
This study aimed to examine how doctors in an inpatient specialist palliative care unit recognized and recorded the spirituality of patients in their care and then to assess the effectiveness of a teaching intervention in spiritual care. (Source: Journal of Pain and Symptom Management)
Source: Journal of Pain and Symptom Management - November 30, 2018 Category: Palliative Care Authors: Daniel Nuzum, Marie Murphy Source Type: research