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A.F. de Boer, , A. Meershoek, J.L. Suurmond
Palliative and Supportive Care pp 1-7; doi:10.1017/s147895152100050x

Background Preserving personal dignity is an important aim of palliative care. Little is known about how physicians perceive and preserve dignity of patients from non-western migration backgrounds. Insight in this is important given the increased demand for culturally sensitive palliative care. Aim To gain insight in how Dutch physicians perceive and preserve dignity in the last phase of life for patients from non-western migration backgrounds. Design Qualitative thematic analysis of semi-structured interviews. Participants Fifteen physicians experienced in palliative care. Results Physicians experienced dilemmas in preserving dignity of non-western patients in three situations: (a) relief of suffering in the terminal phase, (b) termination of interventions and treatment, and (c) disclosure of diagnosis. Physicians wanted to grant the needs of patients in the last phase of their lives, which was central to physicians’ view on dignity, but dilemmas arose when this conflicted with physicians’ other personal and professional values. To make the dilemmas manageable, physicians assessed whether needs of patients were authentic, but due to linguistic, cultural, and communication barriers, this was difficult with non-western patients. To find a way out of the dilemmas, physicians had three strategies: accept and go along with patient's wishes, convince or overrule the patient or family, or seek solutions that were acceptable for all. Conclusions Physicians encounter dilemmas providing palliative care for people from non-western backgrounds. Future physicians can be trained in connective strategies and seeking middle grounds to optimally preserve patients’ dignity while being in concordance with their personal and professional values.
Vicky Yemoh, , Jyothi Alex Abraham
Palliative and Supportive Care pp 1-8; doi:10.1017/s1478951521000456

Background All forms of cancer pose a tremendous and increasing problem globally. The prevalence of cancer across the globe is anticipated to double over the next two decades. About 50% of most cancer cases are expected to occur in low- and middle-income countries (LMICs), where there is a greater disproportionate level in mortality. Access to effective and timely care for cancer patients remains a challenge, especially in LMICs due to late disease diagnosis and detection, coupled with the limited availability of appropriate therapeutic options and delay in proper interventions. Methodology This study explored several mixed-method researches and randomized trials that addressed the preferences of quality delivery of palliative care among cancer patients in LMICs. A designated set of keywords such as Palliative Care; Preferences; Cancer patients; Psycho-social Support; End-of-life Care; Low and Middle-Income Countries were inserted on electronic databases to retrieve articles. The databases include PubMed, Scinapse, Medline, The Google Scholar, Academic search premier, SAGE, and EBSCO host. Results Findings from this review discussed the socioeconomic and behavioral factors, which address the quality delivery of palliative care among cancer patients. These factors if measured with acceptance level in cancer patients could help to address areas that need improvement from the stage of disease diagnosis to the end-of-life. Significance of the results Valuable collaborations among international and local health institutions are needed to build and implement a systematic framework for palliative care in LMICs. Policies and programs that are country and culturally specific, encompassing both theoretical and practical models of care in the milieu of existing quandaries should be developed.
, Khumbulani Hlongwana, Themba Ginindza
Palliative and Supportive Care pp 1-9; doi:10.1017/s1478951521000432

Objective This review provides an overview of the existing literature on the importance of care coordination for lung cancer care and other cancers in general. The review is inclusive of the burden of cancer, with a special reference to lung cancer, as well as challenges and achievements relating to cancer care coordination. Method We conducted a search of online databases of peer-reviewed studies published in the English language. The analysis for this review has been packaged into themes in order to generate results that can inform researchers and cancer health professionals, on the existing gaps necessary for developing appropriate intervention strategies and policy guidelines. Results Cancer is a complex condition that often requires multiple interventions provided by a variety of health professionals within the healthcare continuum. This paper reviewed research studies that explored the supportive care needs of cancer patients. The results are presented in three superordinate themes, namely (a) cancer as a healthcare priority in South Africa (SA), (b) making a case for coordinated cancer care in SA, and (c) care coordination: a poorly defined, yet complex concept. One major need identified was the requirement of informational support. Other essential needs included referral, emotional, and financial support. Significance of results The identification of current obstacles has the potential to guide the development of a model to improve quality coordinated cancer health care. It remains that limited research exists around cancer services and cancer care in the South African region. This narrative review identified common elements and barriers to care for lung cancer patients and survivors, and offers recommendations for developing clinical care models.
, M. Raunkiær, O. Hansen, K.B. Dieperink
Palliative and Supportive Care pp 1-12; doi:10.1017/s1478951521000596

Aim To review current evidence of nurses’ involvement in end-of-life discussions with incurable cancer patients and their family caregivers. Design We conducted a systematic integrative review in accordance with PRISMA guidelines: PROSPERO, registration number: CRD42020186204. Data sources CINAHL, Medline, PsycInfo, Embase. We searched for primary research between 2010 and 2020. Results Of 3,271 references, we found 15 eligible articles: qualitative (n = 12) and quantitative (n = 3). The studies focused on oncology nurses' perspective of involvement in end-of-life discussions. The data analysis resulted in four overall themes: (1) Nursing roles; the advocating, supporting, and reframing roles, and an undefined task, for example in medical consultations, (2) Trust building, (3) Nurse competences, and (4) Medical issues. Significance of results The nurses have several roles in end-of-life discussions, but insufficient competencies to be involved in that kind of discussions, for example to involve and communicate with families. The findings implicate an educational need among the nurses. However, it also points toward an organizational change in the outpatient clinics, for example that end-of-life discussions follow a more structured approach, are offered in a scheduled manner, and that nurses invite the family caregivers to attend.
, Silja Zhang, Stephen Mason, Frank Elsner
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000535

Objective Health professionals in China tend to avoid open communication with terminally ill cancer patients concerning their diagnosis and prognosis. This review aims to explore Chinese cultural beliefs and attitudes concerning disclosure and death among health professionals and cancer patients in China and to investigate preferences of terminally ill cancer patients for a “good death.” Method A narrative literature review was conducted in May 2020 on MEDLINE, EMBASE, and WEB OF SCIENCE to include all studies with clear study design which presented its own study data or referred to data within underlying studies, published between January 2000 and May 2020, having cancer patients and/or healthcare professionals as participants, conducted in Mainland China, Hong Kong, or Taiwan and containing relevant data concerning “medical disclosure” or “good death.” Quality assessment of publications was conducted using the NIH and CASP checklists. Results Primary database search revealed a total of 108 papers of which 9 were ultimately included. The additional hand search led to the inclusion of eight further papers. In total, there were 11 quantitative studies, 4 qualitative studies and 2 literature reviews included in this review. Our findings indicated that most terminally ill cancer patients in China want to know the truth about their diagnosis and prognosis and preferred to be informed by their doctors. Terminally ill cancer patients valued a good relationship with family and medical staff as well as being respected as an individual and wanted to be able to prepare for death. Significance of results Terminally ill cancer patients in China often have a substantial need for information about their condition while their preferences are widely consistent with those in Western societies. Training for health professionals needs to focus on communication skills in order to overcome barriers in patient interaction.
, Behice Erci
Palliative and Supportive Care pp 1-10; doi:10.1017/s1478951521000390

Objective This research aims to examine the effect of playing games with toys made of medical materials in children with cancer on pain that occurs during intravenous (IV) treatment. Methods The randomized controlled clinical trial was conducted between May 2016 and February 2018. The study sample comprised 110 children (experimental group 55; control group 55), determined using power analysis from the study population. The data were collected by the researcher, using face-to-face interview techniques, the Information Form, and Wong–Baker FACES Pain Rating Scale (WBS). Results The pre- and post-test pain mean scores of patients in the experimental group were 2.27 ± 0.91 and 0.43 ± 0.66, respectively (p = 0.0001). The pre- and post-test pain mean scores of patients in the control group were 1.72 ± 0.82 and 3.34 ± 0.77, respectively (p = 0.0001). Significance of results The experience of playing with toys made from materials used for invasive procedures relieves pain the during IV treatment.
, Anjali R. Bhise
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000444

Objective Fatigue is having high prevalence and increased acknowledgment of negative effect on the patient's well-being which has resulted in fatigue being important research variable in breast cancer patients. The recent development shows greater receptivity of health professionals to assessing cancer-related fatigue (CRF). In this review, an attempt has been made to identify CRF instruments which have been used in breast cancer patients with the detailed description about the instruments and their psychometric properties. Method A search was conducted from January 2000 to April 2020 from electronic databases such as PubMed, Cochrane, Embase, and Google Scholar. The studies were included if the instrument was used to measure fatigue in breast cancer patients and its description and psychometric properties reported in breast cancer patients. The search was limited to studies in the English language and use of English version of instruments. Results Among 34 CRF instruments, 9 instruments were included according to inclusion and exclusion criteria. From nine instruments, six were multidimensional, two were unidimensional, and one instrument was quality-of-life (QOL) subscale. All the scales have showed accepted reliability and validity in breast cancer patients. A minimal clinically important difference was available for Multidimensional Fatigue Symptom Inventory — Short Form, Brief Fatigue Inventory, Piper Fatigue Scale — Revised, FACIT Fatigue scale, and Fatigue symptom inventory instruments. Significance of results This review will help healthcare providers who are dealing with breast cancer patients to acknowledge and better understand what their patients are experiencing. The most appropriate tool will allow healthcare providers to use for holistic assessment of CRF. The instrument will help them to monitor their patient's condition or treatment progress, so it can be incorporated into treatment decisions for better management of fatigue.
, Ryo Taguchi, Hirozo Sakaguchi, Kumi Itami, Akira Yoshioka, Izumi Sato, ,
Palliative and Supportive Care pp 1-3; doi:10.1017/s1478951521000481

Objective Cognitive dysfunction has a negative effect on cancer treatment; however, in a cancer setting, specific treatments can restore cognitive function. Such conditions are known as reversible dementia, with one of these being vitamin B12 (VB12) deficiency. However, there have been no reports of VB12 deficiency identified by preoperative evaluation in cancer patients. Method We studied a patient who was referred to the Department of Psycho-oncology on suspicion of cognitive decline prior to lung cancer surgery. Preoperative evaluation revealed VB12 deficiency. Results The patient was an 82-year-old woman diagnosed with lung cancer. She also presented with cognitive decline and, therefore, was referred to the Department of Psycho-oncology for preoperative evaluation. The patient scored 19 points on a Mini-Mental State Examination (MMSE), which is indicative of cognitive decline. As the onset of symptoms occurred several months previously and they were subacute, the possibility of reversible dementia was considered. Extensive examination revealed VB12 deficiency, and VB12 replacement therapy normalized the MMSE score to 25 points before surgery. Significance of the results When cognitive decline is observed in cancer patients, it is necessary to actively evaluate the serum levels of some B vitamins, including VB12.
Palliative and Supportive Care pp 1-1; doi:10.1017/s1478951521000523

Ana Gonzalez-Ling, Oscar Galindo Vázquez, María Luisa Rascón-Gasca, Rebeca Robles, Harvey Max Chochinov
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000468

Lung cancer (LC) is the most frequent and deadly neoplasm in the world, and patients have shown a tendency to have more emotional distress than other cancer populations. Dignity Therapy (DT) is a brief intervention aimed to improve emotional well-being in patients facing life-threatening illness. Objective To analyze the effect of DT on anxiety, depression, hopelessness, emotional distress, dignity-related distress, and quality of life (QoL) in a group of Mexican patients with stage IV LC undergoing active medical treatment with baseline emotional distress. Method In this preliminary pretest–posttest study, patients received three sessions of DT and were evaluated with the HADS, Distress Thermometer, Patient Dignity Inventory, single-item questions, and QLQ-30. Results In total, 24 out of 29 patients completed the intervention. Statistically significant improvements were found in anxiety, depression, emotional distress, hopelessness, and dignity-related distress with large effect sizes. Patients reported that DT helped them, increased their meaning and purpose in life, their sense of dignity, and their will to live, while it decreased their suffering. No changes were found in QoL. Significance of results DT was well accepted and effective in improving the emotional symptoms of LC patients with distress that were undergoing medical treatment. Although more research is warranted to confirm these results, this suggests that DT can be used in the context of Latin-American patients.
Palliative and Supportive Care pp 1-6; doi:10.1017/s1478951521000584

Objective Patients with amyotrophic lateral sclerosis (ALS) experienced prolonged interruption of their rehabilitation palliative care routines due to restrictive COVID-19 pandemic public health measures. This study assesses the effects of before and after the lockdown on functionality rates and quality of life (QoL) in patients with ALS. Methods A longitudinal observational study was conducted. Participants were assessed three times — early January (T0), before mandatory lockdown (T1), and during lockdown (T2) — using the ALS Functional Rating Scale-revised (ALSFRS-R), Fatigue Severity Scale (FSS), and the ALS-Specific Quality of Life-Short Form (ALSSQOL-SF). The paired-sample t-test and Wilcoxon signed-rank test were used. Results Thirty-two patients were included with a mean age of 56.9 (SD 14.2) years and mean symptoms onset of 27.1 (SD 14.3) months. ALSFRS-R mean scores decayed significantly over time when comparing T0–T1 (0.26 ± 0.38) and T1–T2 (1.36 ± 1.43) slopes (p < 0.001). Significant differences were observed between T1 and T2 for ALSSQOL-SF scores (115.31 ± 17.06 vs. 104.31 ± 20.65), especially in four specific domains, and FSS scores (34.06 ± 16.84 vs. 40.09 ± 17.63). Negative correlations between negative emotions and physical symptoms assessed by ALSSQOL-SF and FSS were found. Significance of the results Rehabilitation treatment routines in palliative care, such as physiotherapy and speech therapy, appear to mitigate the ALSFRS-R slope. Prolonged interruption of rehabilitation during the lockdown may have accelerated the functional decline in ALS patients’ motor skills with as measured after 2 months by the ALSFRS-R in the limb and bulbar subscores, but not respiratory subscore. Other short-term effects, increased fatigue and negative impact on QoL, were also verified.
, Yee Keow Chiong, Nicola Ngiam
Palliative and Supportive Care pp 1-10; doi:10.1017/s1478951521000493

Objective To explore parents’ perspectives regarding end-of-life (EOL) decisions, factors and possible barriers that influence the EOL decision making process, and to understand parental preferences for communication about EOL care in an Asian population. Method A prospective questionnaire cohort study conducted in a university-based tertiary care hospital. 30 parents of children who had been admitted to general pediatric wards for acute ailments and/or were being followed up in general pediatric outpatient clinics after inpatient admissions or emergency department visits completed 30 interviewer-administered questionnaires. With the first 10 completed questionnaires, we sought feedback on the design of the four case vignettes and related questions. Responses to specific questions related to each case vignette were rated on a Likert scale. Results The majority of parents were able to comprehend and identify with the issues in the case vignettes, which allowed them to respond appropriately. Parents tended to avoid active withdrawal or withholding of life-sustaining treatment. The top three priorities for parents making EOL decisions for their children were: the chance of improvement, the presence of pain or discomfort, and information provided by healthcare staff. Parents reported that they would prefer to know immediately if their child is at risk of dying; they also preferred to get as much information as possible from the healthcare team and thought that meeting with the healthcare team before making EOL decisions was pivotal. Significance of results Parents place highest priorities on their child's likelihood of improvement, perception of their child's pain, and information provided by healthcare professionals in making EOL decisions.
Palliative and Supportive Care, Volume 19, pp 509-510; doi:10.1017/s1478951521000511

Paul Rousseau
Palliative and Supportive Care pp 1-1; doi:10.1017/s1478951521000419

Palliative and Supportive Care pp 1-2; doi:10.1017/s1478951521000420

Palliative and Supportive Care, Volume 19; doi:10.1017/s1478951521000572

, Lucie Vézina, René Verreault, Sébastien Simard, Éveline Hudon, Jean-François Desbiens, Lise Fillion, Serge Dumont, André Tourigny, Serge Daneault
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000377

Objectives Diagnosis of cancer is emotionally threatening not only for patients but also for their family caregivers (FC) who witness and share much of the illness experience. This study compares distress experienced by lung cancer patients and their FC during the year following the diagnosis. Methods A prospective cohort study of 206 patients recently diagnosed with inoperable lung cancer (participation rate 79.5%) and 131 FC (participation rate 63.6%) was conducted in an ambulatory oncology clinic in Quebec City (Canada). They completed validated questionnaires regarding their personal and psychological characteristics (Hospital and Anxiety Depression Scale—HADS), in the first months after the diagnosis of lung cancer and after 6 and 12 months. Univariate, bivariate, and linear mixed models were conducted to compare patient and FC distress. Results At baseline, 7.8% of patients reported distress (HADS total score >15) and their mean distress score was 7.0 ± 4.9 (range 0–42). In contrast, 33.6% of FC presented significant distress and their mean distress score was 12.0 ± 7.2 (P < 0.0001). Proportions of patients and FC with distress remained relatively stable at 6 and 12 months, and at every time point, FC reported higher levels of distress compared to their relative with cancer (P < 0.0001). Comparable trends were found when looking at the mean scores of distress, anxiety, and depression throughout the study. Significance of results Being diagnosed with lung cancer and going through its different phases seems to affect more FC than patients. The psychological impact of such diagnosis appears early after the diagnosis and does not significantly change over time. These findings reinforce the importance for oncology teams, to include FC in their systematic distress screening program, in order to help them cope with their own feelings and be able to play their role in patient support and care throughout the cancer journey.
, Carla L. Fisher, Michaela D. Mullis, Easton Wollney, Maria Sae-Hau, Elisa S. Weiss,
Palliative and Supportive Care pp 1-8; doi:10.1017/s1478951521000389

Objectives The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers. Methods Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data. Results Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members. Significance of results Differences between the caregivers’ experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.
, David W. Kissane, Fiona McDermott
Palliative and Supportive Care pp 1-8; doi:10.1017/s1478951521000109

Background Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. Context The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. Methods Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. Results Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. Significance of results Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.
Beatriz Moreno-Milan, Bill Breitbart, , , María Cristina Coca Pereira
Palliative and Supportive Care, Volume 19, pp 257-261; doi:10.1017/s1478951521000134

Background Traditionally, the psychological well-being of healthcare workers has been taken for granted — it has even been considered a part of the requirements that were demanded of them. When these professionals have experienced suffering and psychological depletion, they have been held accountable for this suffering, adopting an individualistic and reductionist viewpoint focused only on the professional. This approach has become obsolete due to its proven ineffectiveness, especially from an ethics of responsibility and organization viewpoint. Context The psychological well-being of the healthcare worker (and its opposites: suffering, exhaustion, and disenchantment) is advantageous to the professional's commitment to the institution, to their work performance, and to their personal life. Objective The objective of this paper is to reflect on the psychological suffering of the palliative care professional. Method We will reflect on the three levels of responsibility that influence such suffering (micro-meso-macro-ethical; worker-environment-institution). Results We will propose a global strategy for the care of psychological well-being supported by scientific evidence and key references. Significance of results We conclude with some contributions on what we have learned and still have to learn on this topic.
, Carolina Tojal,
Palliative and Supportive Care pp 1-10; doi:10.1017/s147895152100033x

Objective Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members. Method In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date. Results Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment. Significance of results There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.
, Amy Stern, Robin Hershkowitz, Soo Young Kim, Yuelin Li, Mark Lachs, Holly G. Prigerson
Palliative and Supportive Care, Volume 19, pp 135-145; doi:10.1017/s1478951521000286

Objective Anxiety is common in older adults with cancer (OACs) and their caregivers and is associated with poor outcomes including worse physical symptoms, poor treatment adherence and response, and longer hospitalizations. This study examined the feasibility, acceptability, adherence, and preliminary efficacy of a cognitive-behavioral therapy (CBT) intervention for OACs and their caregivers. Method Patients with active cancer age 65 years and older and their caregivers were randomized to Managing Anxiety from Cancer (MAC), a seven-session CBT-based psychotherapy intervention delivered over the telephone or usual care. Patients and caregivers completed the intervention separately with licensed social workers. Self-report measures of anxiety, depression, and quality of life were administered after randomization and following intervention completion. Analyses were conducted separately for patients and caregivers and at the dyad level. Hierarchical Linear Modeling accounted for the within-dyad intraclass correlation coefficients (ICCs) by random intercepts associated with the dyads. Results Twenty-nine dyads were randomized; 28 (96.6%) patients and 26 (89.7%) caregivers completed all study procedures. Of dyads randomized to MAC, 85.7% (n = 12) of patients and caregivers completed all seven sessions. Most patients (≥50%) and over 80% of caregivers rated the overall intervention and intervention components as “moderately” to “very” helpful. MAC was associated with a greater reduction in anxiety among dyads than usual care, the effect of MAC was greater in caregivers than in patients, and improvement in patient anxiety was associated with the reduction in caregiver anxiety. However, these results did not reach statistical significance. Significance of results This pilot study demonstrates the feasibility of MAC and suggests strategies for improving acceptability, with a focus on adherence. Furthermore, these results indicate that MAC is promising for the reduction of anxiety in OAC–caregiver dyads and may be particularly beneficial for OAC caregivers. Larger randomized controlled trials are needed to evaluate the efficacy of MAC.
Elanur Yılmaz Karabulutlu, , Safiye Yanmış
Palliative and Supportive Care pp 1-8; doi:10.1017/s1478951521000213

Objective Caregivers have a great role in palliative care. Considering the difficult process of palliative care, the caregiver undertakes an extra burden with the responsibility of the patient. This study was carried out to evaluate the care burden and preparedness of caregivers who provide care for palliative care patients. Method This study was conducted in the palliative care unit of a state hospital in Turkey between January and May 2019. No sample was selected in the study, and the study was carried out with individuals who were hospitalized in the palliative care unit and who volunteered to participate in the study between the specified dates. The data were collected with Patient Relative Questionnaire Form, Burden Interview, and Preparedness for Caregiving Scale. Results The average Burden Interview score was found as 33.6, SD 13.03 in the study. Patient relatives perceived the patients they cared for as a burden at moderate levels. The Preparedness for Caregiving score average was found as 18.55, SD 6.83. It was found that patient relatives were moderately prepared to undertake the role of caregiver. It was found that care burden decreased as preparedness for caregiving increased and burden increased as preparedness for caregiving decreased (p = 0.001). Significance of results As a result of the study, it was found that caregivers of palliative patients had the moderate levels of care burden and preparedness for caregiving. It was found that as the preparedness levels of caregivers increased, their burdens decreased. Accordingly, it is important that nurses will plan nursing interventions by considering the factors that affect the care burden and preparedness of caregivers.
, , Joakim Öhlén, Cecilia Larsdotter Ex. Håkanson
Palliative and Supportive Care pp 1-8; doi:10.1017/s147895152100016x

Objective To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective. Method A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim. Results Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40). Significance of results This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.
, Ruth Pat-Horenczyk
Palliative and Supportive Care pp 1-8; doi:10.1017/s1478951521000365

Objective The provision of end-of-life (EOL) care has complex effects on both the professional and personal well-being of medical health personnel (MHP). Previous studies have mostly focused on negative or positive influences as mutually exclusive effects. This study offers a new conceptualization by applying a dialectical lens, looking at secondary traumatic stress (STS) and post-traumatic growth (PTG) as dual possible coexisting phenomena. The creation of four theoretically possible profiles, based on the combinations of high or low levels in each dimension, offers a practical translation of this idea toward intervention development. Method Data were collected at a large tertiary pediatric medical center (n = 1,123) aiming at assessing all personnel. Research methods included collecting demographic data and using validated scales to assess STS, PTG, burnout, compassion satisfaction, and both personal and professional social support. Results We classified four response profiles according to the STS and PTG levels: (1) Dialectical-impact, high STS/high PTG, (2) Growth-dominant, high PTG/low STS, (3) Stress-dominant, high STS/low PTG, and (4) Limited-impact, low STS/low PTG. The four profiles differed based on profession, but not other demographics. Physicians were represented significantly higher in the Stress-dominant profile; nurses were highly represented in the Dialectical-impact profile. A significant difference was found when adding reported EOL care as a distinct factor with a higher relative proportion of the “dialectical” response among those reporting providing EOL care. Significance of results Findings from this study point toward the recognition and understanding of the complexity resulting from the provision of EOL care. A more complex profile classification, including the dialectical profile, may reflect a broader tendency to ways that MHP are affected by their work. Introducing “dialectical thinking” can lead to more personalized and precise intervention planning for MHP. Tailored interventions promoting personal and professional well-being, based on individual profiles, can contribute to more effective interventions and better resource utilization.
Valerie Ward, , Taylor Callander, Beibei Xiong
Palliative and Supportive Care pp 1-15; doi:10.1017/s1478951521000146

Objective This scoping review describes the existing literature which examines the breadth of healthcare providers’ (HCP's) experiences with the provision of medical assistance in dying (MAiD). Method This study employed a scoping review methodology: (1) identify research articles, (2) identify relevant studies, (3) select studies based on inclusion/exclusion criteria, (4) chart the data, and (5) summarize the results. Results In total, 30 papers were identified pertaining to HCP's experiences of providing MAiD. Fifty-three percent of the papers were from Europe (n = 16) and 40% of studies were from the USA or Canada (n = 12). The most common participant populations were physicians (n = 17) and nurses (n = 12). This scoping review found that HCPs experienced a variety of emotional responses to providing or providing support to MAiD. Some HCPs experienced positive emotions through helping patients at the end of the patient's life. Still other HCPs experienced very intense and negative emotions such as immense internal moral conflict. HCPs from various professions were involved in various aspects of MAiD provision such as responding to initial requests for MAiD, supporting patients and families, nursing support during MAiD, and the administration of medications to end of life. Significance of results This review consolidates many of the experiences of HCPs in relation to the provision of MAiD. Specifically, this review elucidates many of the emotions that HCPs experience through participation in MAiD. In addition to describing the emotional experiences, this review highlights some of the roles that HCPs participate in with relation to MAiD. Finally, this review accentuates the importance of team supports and self-care for all team members in the provision of MAiD regardless of their degree of involvement.
, Max Treutlein, Marianna Theochari, Carsten Bokemeyer, Karin Oechsle, Anneke Ullrich
Palliative and Supportive Care pp 1-10; doi:10.1017/s1478951521000353

Objective Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context. Method As part of a secondary analysis, data derived from two qualitative primary studies on FCs’ burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement. Results Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs’ experiences: “Connectedness,” “Religious Faith,” “Transcendence,” “Hope,” and a fifth overarching aspect which we named “Ongoing integration of spiritual experience.” Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs’ narratives. Significance of results In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs’ problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.
, Maria Velia Giulietti, Francesca Romito, Giorgio Reggiardo, Carmela Genovese, Michele Passarella, Letizia Raucci, Marcello Ricciuti, Fabiana Merico, Gerardo Rosati, et al.
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000274

Objectives Older people are not traditionally expected to become caregivers. For this reason, the experience of caregiving in older persons has not been explored adequately in the research on gender differences. The objective of this study was to assess the caregiver burden among older family members who care for cancer patients facing the end of their lives, in order to compare their differences according to gender (male vs. female). Methods This is a cross-sectional study. A total of 102 older caregivers (aged ≥65 years) of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into two gender subgroups. Results Compared with male caregivers, the older female group reported significantly higher scores in the CBI–physical subscale (P = 0.028), and in the CBI, the overall score (P = 0.0399) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. There were no significant differences in the other CBI subscale scores (time-dependent, developmental, social, and emotional). Significance of results Older female caregivers are at higher risk of experiencing burden and worse physical health compared with men. Further research is needed in modern palliative care to assess the role of gender differences in the experience of caregiving when the caregiver is an older person.
Chuqian Chen,
Palliative and Supportive Care pp 1-11; doi:10.1017/s1478951521000250

Objectives To develop and validate Professional Bereavement Scale (PBS), a specific measurement tool for professional bereavement experiences. Methods An online cross-sectional survey collected data from 563 physicians and nurses from urban hospitals in Mainland China. Item consistency analysis, component factor analysis, exploratory factor analysis, and confirmatory factor analysis were run to develop and validate the scale. Correlational analysis was conducted to evaluate the psychometric property of the scale. Results Two subscales of the PBS were developed: the 17-item Short-term Bereavement Reactions Subscale (PBS–SBR) and the 15-item Accumulated Global Changes Subscale (PBS–AGC). Four factors, namely, frustration and trauma, guilt, grief, and being moved, are involved in PBS–SBR. Five factors are involved in PBS–AGC, which are new insights, more acceptance of limitations, more death-related anxiety, less influenced by patient deaths, and better coping with patient deaths. Both subscales have good content validity, construct validity, and criterion validity, as well as satisfactory internal consistency and split-half reliability. Significance of results PBS is a specific assessment tool for professional bereavement which is clearly defined, comprehensive, rigorously tested, and generalizable to different professional caregivers from various departments. Unveiled constructs illustrate that professional bereavement experiences contain a professional dimension in addition to a personal dimension both in an event-specific and a global perspective, which distinguishes them from familial bereavement experiences.
, Tomohiko Taniyama, Ayako Kikuchi, Tetsuo Hori, Akira Yoshioka, Akira Inoue
Palliative and Supportive Care pp 1-6; doi:10.1017/s147895152100002x

Background In recent years, the use of both molecular targeting agents (MTAs) and immune-checkpoint inhibitors (ICIs) tend to occupy important positions in systemic anticancer therapy (SACT). The objective of this study is to describe the predictors of SACT include both MTAs and ICIs near the end of life (EOL) and the effect on EOL care in patients with advanced cancer. Methods We analyzed all patients who died of advanced cancer from August 2016 to August 2019, and we analyzed the survival time of patients who underwent anticancer agents excluded due to the loss of information about the last administration of SACT. The primary endpoint of this study was to identify predictors during the last administration of SACT near EOL. Results In a multivariate analysis, the Eastern Cooperative Oncology Group performance status (ECOG-PS) (ORs 33.781) was significantly related factors within 14 days of death from the last administration of SACT. Age (ORs 0.412), ECOG-PS (ORs 11.533), primary cancer site of upper GI cancers (ORs 2.205), the number of comorbidities (ORs 0.207), MTAs (ORs 3.139), and ICIs (ORs 3.592) were significantly related factors within 30 days of death. The median survival time (MST) of patients with PS 3–4 was 29 days, while that of patients with both PS 0–2 was 76 days. The prevalence rate of delirium with MTAs was 17.5%, which was significantly lower than that of patients without it (31.8%). The prevalence rate of the mean dose of opioids in patients with ICIs was 97.9 mg/day, which was significantly higher than that of patients without it (44.9 mg/day). Conclusions Age, ECOG-PS, primary cancer site, the number of comorbidities, MTAs, and ICIs use were significant associated with SACT near EOL. Information on these factors may aid clinical decision making in referral to palliative care institutes.
, Shila Pandey, Andrew S. Epstein, Stephen R. Connor, Judith E. Nelson
Palliative and Supportive Care, Volume 19, pp 182-186; doi:10.1017/s1478951521000237

Objective On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5–6, 2021. Methods Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses. Results The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development. Significance of results Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.
, Wong Ka Ghee, Ng Yun Hui, Ooi Chieh Yin, Khoo Wei Shen Kelvin, See Toh Yiling, Tan Ai Huey, David Paul Capelle, Sheriza Izwa Zainuddin, Loh Ee Chin, et al.
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000262

Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.
Evelyne K. Tantry
Palliative and Supportive Care pp 1-2; doi:10.1017/s1478951521000304

Paul Rousseau
Palliative and Supportive Care pp 1-1; doi:10.1017/s1478951521000316

Palliative and Supportive Care pp 1-2; doi:10.1017/s1478951521000328

, M. Garett, A. Byrne, P. Poon, K. Gardner, D. Azar, L. Craig, L. Karimi
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000092

Objective End-of-life and anticipatory medications (AMs) have been widely used in various health care settings for people approaching end-of-life. Lack of access to medications at times of need may result in unnecessary hospital admissions and increased patient and family distress in managing palliative care at home. The study aimed to map the use of end-of-life and AM in a cohort of palliative care patients through the use of the Population Level Analysis and Reporting Data Space and to discuss the results through stakeholder consultation of the relevant organizations. Methods A retrospective observational cohort study of 799 palliative care patients in 25 Australian general practice health records with a palliative care referral was undertaken over a period of 10 years. This was followed by stakeholders’ consultation with palliative care nurse practitioners and general practitioners who have palliative care patients. Results End-of-life and AM prescribing have been increasing over the recent years. Only a small percentage (13.5%) of palliative care patients received medications through general practice. Stakeholders’ consultation on AM prescribing showed that there is confusion about identifying patients needing medications for end-of-life and mixed knowledge about palliative care referral pathways. Significance of results Improved knowledge and information around referral pathways enabling access to palliative care services for general practice patients and their caregivers are needed. Similarly, the increased utility of screening tools to identify patients with palliative care needs may be useful for health care practitioners to ensure timely care is provided.
Yoshiyuki Takimoto
Palliative and Supportive Care pp 1-2; doi:10.1017/s1478951521000249

Emília Comas Carbonell, , Ester Busquets-Alibés
Palliative and Supportive Care pp 1-11; doi:10.1017/s1478951521000031

Objective The purpose of this systematic review is to describe the elements of the psychological experience of pediatric oncology patients facing life-threatening situations and the corresponding care needs. Methods The study design is a systematic review following the PRISMA standard of qualitative, quantitative, and mixed-methods research. The review was conducted using multiple databases, including Scopus, Web of Science, PubMed, and PsycINFO. The risk of bias of the articles was evaluated with the “Critical Appraisal Skills Programme.” Results A total of 21 articles met inclusion criteria. The analysis of the evidence revealed that the psychological experience involves changes in relationships, thoughts about death, emotional changes, physical symptoms, spiritual changes, and feelings of uncertainty. Significance of results The care needs identified are maintaining normality, controlling physical and psychological symptoms, and that maintaining hope is an important aspect for children. Whether or not the children want to talk about death is another important aspect that needs to be reflected upon, and it would be appropriate to consider, on an individual level, involving patients in the discussion on the diagnosis and treatment of the illness. Future research should be conducted from the children's perspective since most existing research is from the perspective of the family members or health professionals. Furthermore, it is recommended to take into account qualitative approaches that provide more detailed information on the patients’ subjectivity.
, Kathyrine A. Calong Calong
Palliative and Supportive Care pp 1-4; doi:10.1017/s1478951521000079

Objective The study was conducted in order to determine the relationship between spiritual well-being and self-transcendence and to identify the spiritual practices utilized by Filipino patients who are recovering from breast cancer. Methods A descriptive correlational study was used, and a purposive sampling technique was utilized to select the participants in the study. Data were collected using self-administered questionnaires and were analyzed using frequency, percentage, mean, standard deviation, and Pearson's r correlation. Results The study revealed that the overall mean score of the spiritual index of well-being among the participants was 4.41 (±0.54), while the mean score of self-transcendence was 3.64 (±0.50). The results showed that there was a significant relationship between spirituality and self-transcendence among Filipino women with breast cancer. Significance of results Filipino women with breast cancer rely on their spirituality, which enables them to find meaning in their illness. Hence, assessing spirituality among this population group will enable nurses to provide holistic nursing care, as this can help them cope with the challenges associated with their illness.
Palliative and Supportive Care pp 1-6; doi:10.1017/s1478951521000158

Objective The purpose of this study is to identify whether there is an opportunity for improvement to provide palliative care services after a serious fall. We hypothesized that (1) palliative care services would be utilized in less than 10% of patients over the age of 65 who fall and (2) more than 20% of patients would receive aggressive life-sustaining treatments (LSTs) prior to death. Methods Using the 2017 Nationwide Inpatient Sample, we identified patients who were admitted to the hospital with a fall (ICD-10 W00-W19) and were hospitalized at least two days with valid discharge data. Palliative care services (Z51.5) or LSTs (cardiopulmonary resuscitation, ventilation, reintubation, tracheostomy, feeding tube placement, vasopressors, transfusion, total parenteral nutrition, and hemodialysis) were identified with ICD-10 codes. We examined the use of palliative care or LSTs by discharge destination (home, facility, and death). Logistic regression was used to identify factors associated with palliative care. Results In total, 155,241 patients were identified (median 82 years old, interquartile range 74–88); 2.5% died in hospital, and 69.4% were transferred to a facility. Palliative care occurred in 4.5% of patients, and LST occurred in 15.1%. Patients who died were significantly more likely to have had palliative care (50.1% vs. 3.4% of home or facility discharges) and were more likely to have an LST [53.0% vs. 9.8% (home) vs. 15.9% (facility)]. Palliative care was associated with both death [adjusted odds ratio (AOR) 19.84, 95% confidence interval (CI) 18.39–21.41, p < 0.001] and LST (AOR 1.36, 95% CI 1.27–1.46, p < 0.001). Significance of results Palliative care is associated with both death and LST, suggesting that physicians use palliative care as a last resort after aggressive measures have been exhausted. Patients who fall would likely benefit from the early use of palliative care to align future goals of care.
Hiroki Sakurai, Mitsunori Miyashita, Tatsuya Morita, Akemi Shirado Naito, Shingo Miyamoto, Hiroyuki Otani, Junko Nozato, Naosuke Yokomichi, Kengo Imai, Ai Oishi, et al.
Palliative and Supportive Care pp 1-7; doi:10.1017/s1478951521000018

Objectives The goal of palliative and supportive care is to improve patients’ quality of life (QoL). Patient-reported outcome measures (PROMs) are the gold standard for the assessment of QoL and symptoms; however, when self-reporting is complicated, PROMs are often substituted with proxy-reported outcome measures, such as clinician-reported outcome measures. The objective of this study was to assess the validity and reliability of the Japanese version of the Integrated Palliative care Outcome Scale (IPOS) for staff (IPOS-Staff). Methods This multicenter, cross-sectional observational study was conducted concurrently with the validation of the IPOS for patients (IPOS-Patient). Japanese adult patients with cancer and their staff were recruited. We assessed the characteristics of the patients and staff members, missing values, prevalence, and total IPOS scores. For the analysis of criterion validity, intra-rater, and inter-rater reliability, we calculated intraclass correlations (ICCs). Results One hundred and forty-three patients completed the IPOS-Patient, and 79 medical staff members completed the IPOS-Staff. The most common missing values from IPOS-Staff were Family Anxiety (3.5%) and Sharing Feelings (3.5%). Over half of the patients scored themselves moderate or worse for Poor Mobility, Anxiety, and Family Anxiety, while staff members scored patients moderate or worse for Weakness, Anxiety, and Family Anxiety. For criterion validity (patient–staff agreement) as well as intra-rater and inter-rater reliability, ICCs ranged from 0.114 (Sharing Feelings) to 0.826 (Nausea), 0.720 (Anxiety) to 0.933 (Nausea), and −0.038 (Practical Problems) to 0.830 (Nausea), respectively. Significance of results The IPOS-Staff is easy to respond to; it has fair validity and reliability for physical items but poor for psycho-social items. By defining the context and objectives of its use and interpretation, the IPOS-Staff can be a useful tool for measuring outcomes in adult patients with cancer who cannot complete self-evaluations.
Palliative and Supportive Care pp 1-1; doi:10.1017/s1478951521000201

, , Catarina Samorinha, Harvey Max Chochinov
Palliative and Supportive Care pp 1-6; doi:10.1017/s1478951521000183

Objective Telephone availability is integrated into our home-based palliative care team (HPCT) with the aim of helping terminally ill patients and their caregivers alleviate their physical and psychosocial suffering, in addition to the team's home visits. We aimed to compare the differences between non-callers (patients with no phone calls during the team's follow-up period) vs. callers (≥1 phone call during the team's follow-up period) across sociodemographic, clinical, physical, and psychosocial variables. Method Retrospective analysis of all patients with and without phone call entries registered in our anonymized database, from October 2018 to September 2020. Results We analyzed 389 patients: 58% were male, and the average age was 71 years old; 84% had malignancies, with a mean palliative performance status of 45%. The majority of patients (n = 281, 72%) made at least one phone call to HPCT. On average, a mean of 2.5 calls (SD = 3.61; range: 0–26) per patient was registered. Callers compared with non-callers more frequently lived with someone (p = 0.030), preferred home as a place to die (p = 0.039), had more doctor (p = 0.010) and nurse home visits (p = 0.006), a prolonged HPCT follow-up time (p = 0.053), along with more frequent emergency room visits (p < 0.001) and hospitalizations (p = 0.043). Moreover, those who made at least one phone call to the HPCT had a higher frequency of conspiracy of silence (p = 0.046), anxiety (p = 0.044), and lower palliative performance status (p = 0.001). No statistically significant associations or differences were found for the other variables. Significance of results Several factors seem to correlate with an increased number of phone calls, and physical suffering does not play a relevant role in triggering contacts, in contrast with psychosocial and other clinical factors.
, Abby R. Rosenberg, Brian Pennarola, Abigail Fry, Meaghann Weaver
Palliative and Supportive Care, Volume 19, pp 129-134; doi:10.1017/s1478951521000225

Objective Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
Tania Pastrana, , Katherine Pettus, Alison Ramsey, Genevieve Napier, Roberto Wenk, Lukas Radbruch
Palliative and Supportive Care, Volume 19, pp 187-192; doi:10.1017/s1478951521000298

Objective With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a “tsunami of suffering.” Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation. Method We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame. Results Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies. Significance of results The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers’ capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.
, Tatsuya Morita, Masanori Mori, Isseki Maeda, Shunsuke Oyamada, Akemi Shirado Naito, Kiyofumi Oya, , Satoko Ito, , et al.
Palliative and Supportive Care pp 1-10; doi:10.1017/s1478951521000080

Objectives The present study aims were (1) to identify the proportion of terminally ill cancer patients with desire for hastened death (DHD) receiving specialized palliative care, (2) to identify the reasons for DHD, and (3) to classify patients with DHD into some interpretable subgroups. Methods Advanced cancer patients admitted to 23 inpatients hospices/palliative care units in 2017 were enrolled. Data were prospectively obtained by the primarily responsible physicians. The presence/absence of DHD and reasons for DHD were recorded. A cluster analysis was performed to identify patterns of subgroups in patients with DHD. Results Data from 971 patients, whose Richmond Agitation–Sedation Scale score at admission was zero and who died in palliative care units, were analyzed. The average age was 72 years, common primary cancer sites were the gastrointestinal tract (31%) and the liver/biliary ducts/pancreas (19%). A total of 174 patients (18%: 95% confidence interval, 16–20) expressed DHD. Common reasons for DHD were dependency (45%), burden to others (28%), meaninglessness (24%), and inability to engage in pleasant activities (24%). We identified five clusters of patients with DHD: cluster 1 (35%, 61/173): “physical distress,” cluster 2 (21%, 37/173): “dependent and burdensome,” cluster 3 (19%, 33/173): “hopelessness,” cluster 4 (17%, 30/173): “profound fatigue,” and cluster 5 (7%, 12/173): “extensive existential suffering.” Conclusions A considerable number of patients expressed DHD and could be categorized into five subgroups. These findings may contribute to the development of therapeutic strategies.
Kelly Lastrapes, Malisa Dang, J. Brian Cassel, Tamara Orr, Tracye Proffitt,
Palliative and Supportive Care pp 1-4; doi:10.1017/s1478951521000171

Objective Screening tools for delirium are being used more consistently in pediatric critical care. However, screening is not universal, and delirium may be underdiagnosed, misdiagnosed, or undocumented in hospitalized patients. We evaluated the identification and documentation of delirium in pediatric oncology and bone marrow transplant patients. Method A retrospective chart review on all hospitalized pediatric oncology and bone marrow transplant patients admitted to an Academic Cancer center between 2013 and 2016. Patients aged less than 21 years of age with active cancer were included. Patients with major psychiatric conditions, developmental delays, or autism were excluded. Data were collected to characterize documentation concerning the identification and diagnosis of delirium. Results Of 201 hospitalization records, 54 (26.9%) admissions from 109 unique patients had documentation of delirium. The overall documented incidence of delirium was 3.2% of hospitalizations or 8.2% of unique patients. Patients prescribed opioids and benzodiazepines were more likely to have documentation of delirium. ICD coding under-reported delirium while physician documentation was inaccurate in 26% (53/201) when compared with the chart review. Significance of results Delirium was frequently undocumented or miscoded. Implementing a validated, universal screening tool for delirium may improve identification and clinical outcomes.
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