Paediatric oncology providers' perspectives on early integration of paediatric palliative care

2020 ◽  
Vol 26 (3) ◽  
pp. 100-109 ◽  
Author(s):  
Rima Saad ◽  
Lina Badr Kurdahi ◽  
Nuhad Yazbick-Dumit ◽  
Christelle Irani ◽  
Samar Muwakkit

Background: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration of palliative care so that measures to create informed care decisions are based on reconciling their views. Aims: To explore the perceptions of paediatric oncology providers at the Children's Cancer Institute (CCI) in Lebanon regarding the integration of early paediatric palliative care (PPC) in the management of children with cancer. Methods: A qualitative descriptive research design with focus groups was used in a leading paediatric oncology setting. Findings: The thematic analysis yielded four themes: (1) healthcare providers understood palliative care as pain relief and psychological support mainly at the end of life; (2) the timing of integrating PPC is linked to end of life, advanced disease or treatment failure; (3) interdisciplinary collaboration is important for addressing patients' and families' needs effectively; and (4) communication with the child and family is one of the most difficult aspects of integrating PPC. Conclusion: This study demonstrated the perceptions of healthcare providers about early palliative care in paediatric oncology in Lebanon. It also highlighted the importance of interdisciplinary collaboration and effective communication with the child and family for better management of PPC.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 36-36
Author(s):  
Cheruppolil R. Santhosh-Kumar ◽  
Deborah Gray ◽  
Stephanie Struve ◽  
Carol Huibregtse

36 Background: Integrating early palliative care with cancer treatment improves quality of life and survival. Effective communication among physicians, patients and their loved ones is crucial to end-of-life, hospice and palliative care discussions. To address the inherent challenges in these discussions, we implemented a structured outpatient palliative care family conference (OFC) program at our community cancer clinic. Methods: A team comprising a hematologist/oncologist, cancer nurse navigator and social worker developed a toolkit for conducting an OFC, recognizing that each family conference is a unique adaptive challenge. New patients with advanced malignancies and limited life expectancy (<12 months) were offered a 90-minute structured OFC attended by the care team, patient and family members and or friends. Pre and post-conference patient satisfaction surveys and other data were collected prospectively. Results: From March 2014 through May 2015, fortyOFC were conducted (16 female and 24 male patients, median age: 67 years). Diagnoses were advanced gastrointestinal (14), lung (12), hematologic (6) and other (8) malignancies. As a direct result of the OFC program, 18 patients ordered do-not-resuscitate bracelets, 15 completed advanced directives, 7 submitted paperwork for disabled parking permits, 7 were referred to hospice and 4 for rehabilitation therapy. Further results are shown in the table. Conclusions: Structured outpatient palliative care family conferences improve satisfaction of end-of-life discussions and facilitate integration of palliative care options. Enhanced communication between providers, patients and loved ones eases the challenges of such discussions. The OFC approach could be a model for integrating palliative care in community cancer clinics. [Table: see text]


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 114-114
Author(s):  
Dilip Sankar Babu ◽  
J Nicholas Dionne-Odom ◽  
Lisa Zubkoff ◽  
Tasha Smith ◽  
Marie Bakitas

114 Background: Early integration of palliative care has been increasingly recognized as an important component in the care of cancer patients, including during active anticancer treatment. Yet, palliative and supportive care interventions remain to be well integrated into standard oncology practice. We sought to develop an original survey instrument in order to describe oncology providers’ perceptions of palliative care, particularly when introduced in the early and concurrent setting. Methods: We conducted a systematic review of literature pertaining to perceptions of palliative care and barriers to referral, and extracted survey items where they were found. This pool of questions was narrowed to focus on early/concurrent palliative care, and supplemented with original items. The draft survey was then systematically validated using a standardized scoring system and content-validity approach. Results: Twenty-two studies were reviewed. From an initial pool of fifty items, twenty-nine were selected for the draft survey. The draft was then reviewed by ten oncology providers, who scored each item and provided comments. Conclusions: We have produced a fully validated survey instrument that will be used to characterize oncology providers’ perceptions of early and concurrent palliative care interventions. The validated survey will be administered to oncology clinicians (including nurses, social workers and chaplains) at four academic medical centers at which an early palliative care intervention is currently being implemented. We hope to assess perceptions before and after implementation of the early palliative care intervention.


2021 ◽  
pp. bmjspcare-2020-002419
Author(s):  
Nadine Kleiner ◽  
Sofia C. Zambrano ◽  
Steffen Eychmüller ◽  
Susanne Zwahlen

ObjectivesEvidence for the positive impact of the early integration of palliative care (EPC) continues to grow. Less is known about how EPC improves patient and family outcomes, including the content of EPC consultations. Therefore, we aimed to better understand the content of EPC consultations including areas addressed, percentage covered per area and interaction style.MethodsAs part of a trial in which EPC in addition to oncology care was compared with oncology care alone, we audio recorded 10 interventions. The palliative care team led the interventions using SENS, a conversation structure, which stands for: Symptoms, End-of-life decision-making, Network and Support. We employed two approaches to analysis: the Roter interaction analysis system (RIAS) to analyse interaction dynamics and SENS as a framework for content analysis.ResultsPhysician–patient communication covered 91% of the interaction. According to RIAS, the consultations were evenly dominated between physicians and patients (ratio=1.04) and highly patient-centred (ratio=1.26). Content wise, rapport was the largest category covering 27% of the consultation, followed by decision-making (21%) and by symptom assessment/management (17%) including 8.1% for physical symptoms and 5.4% for psychosocial aspects. Network discussions covered 17%, and lastly, support for the family 7%.ConclusionsEPC consultations cover a variety of end-of-life topics while putting a high value in establishing rapport, developing a relationship with patients, and on providing reassurance and positive emotional talk. EPC consultations using predefined structures may guarantee that a minimum of important aspects are addressed in a way in which the relationship with the patient remains at the centre.


2021 ◽  
Vol 27 (6) ◽  
pp. 303-315
Author(s):  
Marzieh Hasanpour ◽  
Mamak Tahmasebi ◽  
Masoud Mohammadpour ◽  
Batool Pouraboli ◽  
Fahimeh Sabeti

Background: The integration of paediatric palliative care into the Iranian health system is essential. Aims: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences of healthcare providers. Methods: A qualitative study with content analysis approach was conducted. Fifteen physicians and nurses were selected by purposeful sampling. The semi-structured, in-depth interviews were applied in the data collection. Findings: Ten main categories were extracted from data analysis, including ‘caring in COVID-19’, ‘communication and family centre care’, ‘breaking bad news’, palliative care training’, ‘pain and symptom management’, ‘support of the child, family and clinical team’, ‘physical environment’, ‘guidelines’, ‘specialised staff’ and ‘home based palliative care’. Conclusion: Palliative care in the PICU faces several challenges, especially during COVID-19, but the clinical team are making every attempt to improve the comprehensive care of children and their families. Telehealth is important in COVID-19, and education is also a key component to improve palliative care in the PICU in Iran.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24003-e24003
Author(s):  
Munir Murad Junior ◽  
Thiago Henrique Mascarenhas Nébias ◽  
Marcos Antonio da Cunha Santos ◽  
Mariangela Cherchiglia

e24003 Background: Chemotherapy in the last days of life is not associated with a survival benefit, and recent data suggest it may cause harm by decreasing quality of life and increasing costs. Both ESMO and ASCO have published position statements encouraging discussions about the appropriate cessation of chemotherapy. End-of-life chemotherapy rates vary worldwide but in summary, up to a fifth of cancer patients are treated with chemotherapy in the last month of life with no clear benefits. The aim of this study is to describe the rate of chemotherapy use in the last month of life in patients who are candidates for palliative care in Brazil. Methods: It is a prospective non-concurrent cohort carried out from a database developed through probabilistic and deterministic linkage of data from information systems of the Brazilian Public Health System. The study population is composed of all patients who started cancer treatment between 2009 and 2014 and who was hospitalized at least 1 time after starting treatment. To address the indication for palliative care, patients whose death occurred within one year after the first hospitalization were selected. Results: A total of 299,202 patients started cancer treatment in that period and 62,249 died 1year after hospitalization. Among the deceased patients, the median age was 62 years, 50.9% of them were in stage IV and 34.1% in stage III and 46% lived in the southeastern region of the country. The most common cancers were lung (n = 17805; 28.6%) colorectal (n = 12273; 19.7%) and gastric (n = 10248; 16.5%). The average number of hospitalizations was 2.7 and 89% of these patients required emergency hospitalization. About half (45,4%; n=28,250) of the patients underwent chemotherapy at the last 30 days of life. The rates of use of chemotherapy in the last month was 44% for lung cancer, 74,4% for colon, 50.2% for gastric and 51.8% breast cancers. Conclusions: Despite international recommendations on the use of chemotherapy at the end of life, this seems to be a common practice unfortunately. Measures to implement early palliative care should be a priority for the care of cancer patients in Brazil.


2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Caleb Hanson Gage ◽  
Heike Geduld ◽  
Willem Stassen

Abstract Background Palliative care is typically performed in-hospital. However, Emergency Medical Service (EMS) providers are uniquely positioned to deliver early palliative care as they are often the first point of medical contact. The aim of this study was to gather the perspectives of advanced life support (ALS) providers within the South African private EMS sector regarding pre-hospital palliative care in terms of its importance, feasibility and barriers to its practice. Methods A qualitative study design employing semi-structured one-on-one interviews was used. Six interviews with experienced, higher education qualified, South African ALS providers were conducted. Content analysis, with an inductive-dominant approach, was performed to identify categories within verbatim transcripts of the interview audio-recordings. Results Four categories arose from analysis of six interviews: 1) need for pre-hospital palliative care, 2) function of pre-hospital healthcare providers concerning palliative care, 3) challenges to pre-hospital palliative care and 4) ideas for implementing pre-hospital palliative care. According to the interviewees of this study, pre-hospital palliative care in South Africa is needed and EMS providers can play a valuable role, however, many challenges such as a lack of education and EMS system and mindset barriers exist. Conclusion Challenges to pre-hospital palliative care may be overcome by development of guidelines, training, and a multi-disciplinary approach to pre-hospital palliative care.


2019 ◽  
Vol 33 (7) ◽  
pp. 783-792 ◽  
Author(s):  
Monica Fliedner ◽  
Sofia Zambrano ◽  
Jos MGA Schols ◽  
Marie Bakitas ◽  
Christa Lohrmann ◽  
...  

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.


2008 ◽  
Vol 26 (10) ◽  
pp. 1717-1723 ◽  
Author(s):  
Joanne Wolfe ◽  
Jim F. Hammel ◽  
Kelly E. Edwards ◽  
Janet Duncan ◽  
Michael Comeau ◽  
...  

Purpose In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. Methods Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). Results In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002). Conclusion Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.


Sign in / Sign up

Export Citation Format

Share Document