BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC).
METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area. Hospital data was combined with nationwide mortality databases. Complete data were collected and checked from clinical records, including first referral to PC, chemotherapy within 14 days of death, >=1 intensive care unit (ICU) admission, >=2 emergency department visits (ED), and >= 2 hospitalizations, all within 30 days of death.
RESULTS: Overall (min-max) indicator values as reported by facility providing care rather than the place of death, were: 16% (8-25%) patients received chemotherapy within 14 days of death, 16% (6-32%) had >=2 admissions to acute care, 6% (0-15%) had >=2 emergency visits and 18% (4-35%) had >=1 intensive care unit admission(s). Only 53% of these patients met the PC team, and the median (min-max) time between the first intervention of the PC team and death was 41 (17-112) days. The introduction of PC > 30 days before death was independently associated with lower intensity of care.
CONCLUSIONS: Aggressiveness of end-of-life cancer care is highly variable across centres. This validates the use of indicators to monitor integrated PC in oncology. Disseminating a quality audit-feedback cycle should contribute to a shared view of appropriate end-of-life care objectives, and foster action for improvement among care providers.
BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
BACKGROUND: Palliative care programs in the United States are becoming more integrated with oncology outpatient practices.
OBJECTIVES: This article offers a condensed review of available literature on the usefulness of palliative care in the oncology clinic setting and a case study to illustrate these ideas.
METHODS: Literature was reviewed related to the successes and failures of providing an embedded palliative care team in an oncology clinic and its role and effectiveness as part of a collaborative interprofessional team for patients with cancer.
FINDINGS: The incorporation of palliative care into outpatient oncology clinics presented a reduction in symptom burden, financial burden, and emergency department visits for symptom management. Palliative care also facilitates increased communication between patients and providers to ensure that care meets patients' wishes.
BACKGROUND: Virtual reality (VR) immersive environments have been shown to be effective in medical teaching. Our university hospital received funding from our deanery, Health Education in Wales, to film teaching videos with a 360-degree camera.
AIMS: To evaluate whether VR is an effective and acceptable teaching environment. VR headsets were set up for medical students who rotated through Velindre Cancer Hospital's Palliative Care department.
METHODS: Students were asked to put on a VR headset and experience a pre-recorded 27 min presentation on nausea and vomiting in palliative care settings. They subsequently viewed a radiotherapy treatment experience from a patient's point of view.
RESULTS: Of the 72 medical students who participated, 70 found the experience comfortable, with two students stating they felt the experience uncomfortable (1=too tight; 1=blurry visuals). Numerical scoring on ability to concentrate in VR from 0 to 10 (0=worst, 10=best) scored an average of 8.44 (range, 7-10). Asked whether this format suited their learning style, average score was 8.31 (range 6-10). 97.2 % (n=70) students stated that they would recommend this form of learning to a colleague, with one student saying he/she would not recommend and another stating he/she was unsure. Students left anonymous free-text feedback comments which helped frame future needs in this emerging area.
DISCUSSION: This study suggests that there is room for exploring new ways of delivering teaching and expanding it more widely in palliative care and oncology, but also provides feedback on areas that need further careful attention. Comments from students included: "Might have been the novelty factor but I learnt more from this 20 min VR thing than I have from many lectures".
SUMMARY: The project has proved sufficiently popular in medical student feedback, that the VR experience is now available on YouTube and has been permanently introduced into routine teaching. Further 360-degree teaching environments have been filmed. Of note is that our 360-degree videos have been viewed in Africa, so this format of teaching could prove valuable due to its global reach.
La décision médicale partagée est un processus complexe, notamment concernant l’arrêt des traitements spécifiques en oncologie. D’une part, le patient, plus vulnérable du fait d’une maladie avancée, et ses proches, redoutent cette interruption. D’autre part, l’oncologue dispose de plus en plus de possibilités thérapeutiques grâce aux avancées médicales réalisées ces dernières années. Une étude prospective observationnelle a été menée en oncologie. Elle s’est intéressée aux motifs faisant émerger le questionnement, au degré de concordance entre les différents interlocuteurs (équipe de soins palliatifs, oncologue, patients et proches) et à la décision finalement prise.
In May 2018, the Right to Try (RTT) Act was signed into law, and it aims to increase access to investigational drugs for people with life-threatening illnesses. Although compassion is widely viewed as the motivating logic of the RTT Act, there are also indisputable economic and political motivations. These motivations reflect the mindset that the development and delivery of cures is being impeded primarily by risk-averse scientists and regulators, when what is required is a bold commitment to save dying people, unencumbered by timid procedural hurdles. Considerable attention has been paid to how this legislation differs from the US Food and Drug Administration’s (FDA’s) existing Expanded Access regulations.2 However, during the bill’s progress through Congress, some of the concerns raised about the potential for unintended negative consequences of the law have been missing from the discussion. Herein, we consider one of these concerns: the Act’s potential to undermine palliative care for children with cancer.
Importance High-quality conversations between clinicians and seriously ill patients about values and goals are associated with improved outcomes but occur infrequently.
Objective To examine feasibility, acceptability, and effect of a communication quality-improvement intervention (Serious Illness Care Program) on patient outcomes.
Design, Setting, and Participants A cluster randomized clinical trial of the Serious Illness Care Program in an outpatient oncology setting was conducted. Patients with advanced cancer (n = 278) and oncology clinicians (n = 91) participated between September 1, 2012, and June 30, 2016. Data analysis was performed from September 1, 2016, to December 27, 2018. All analyses were conducted based on intention to treat.
Interventions Tools, training, and system changes.
Main Outcomes and Measures The coprimary outcomes included goal-concordant care (Life Priorities) and peacefulness (Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire) at the end of life. Secondary outcomes included therapeutic alliance (Human Connection Scale), anxiety (Generalized Anxiety Disorder 7 scale), depression (Patient Health Questionnaire 9), and survival. Uptake and effectiveness of clinician training, clinician use of the conversation tool, and conversation duration were evaluated.
Results Data from 91 clinicians in 41 clusters (72.9% participation; intervention, n = 48; control, n = 43; 52 [57.1%] women) and 278 patients (45.8% participation; intervention, n = 134; control, n = 144; 148 [53.2%] women) were analyzed. Forty-seven clinicians (97.9%) rated the training as effective (mean [SD] score, 4.3 [0.7] of 5.0 possible); of 39 who received a reminder, 34 (87.2%) completed at least 1 conversation (median duration, 19 minutes; range, 5-70). Peacefulness, therapeutic alliance, anxiety, and depression did not differ at baseline. The coprimary outcomes were evaluated in 64 patients; no significant differences were found between the intervention and control groups. However, the trial demonstrated significant reductions in the proportion of patients with moderate to severe anxiety (10.2% vs 5.0%; P = .05) and depression symptoms (20.8% vs 10.6%; P = .04) in the intervention group at 14 weeks after baseline. Anxiety reduction was sustained at 24 weeks (10.4% vs 4.2%; P = .02), but depression reduction was not sustained (17.8% vs 12.5%; P = .31). Survival and therapeutic alliance did not differ between groups.
Conclusions and Relevance The results of this cluster randomized clinical trial were null with respect to the coprimary outcomes of goal-concordant care and peacefulness at the end of life. Methodologic challenges for the primary outcomes, including measure selection and sample size, limit the conclusions that can be drawn from the study. However, the significant reductions in anxiety and depression in the intervention group are clinically meaningful and require further study.
Importance Earlier clinician-patient conversations about patients’ values, goals, and preferences in serious illness (ie, serious illness conversations) are associated with better outcomes but occur inconsistently in cancer care.
Objective To evaluate the efficacy of a communication quality-improvement intervention in improving the occurrence, timing, quality, and accessibility of documented serious illness conversations between oncology clinicians and patients with advanced cancer.
Design, Setting, Participants This cluster randomized clinical trial in outpatient oncology was conducted at the Dana-Farber Cancer Institute and included physicians, advanced-practice clinicians, and patients with cancer who were at high risk of death.
Main Outcomes and Measures The primary outcomes (goal-concordant care and peacefulness at the end of life) are published elsewhere. Secondary outcomes are reported herein, including (1) documentation of at least 1 serious illness conversation before death, (2) timing of the initial conversation before death, (3) quality of conversations, and (4) their accessibility in the electronic medical record (EMR).
Results We enrolled 91 clinicians (48 intervention, 43 control) and 278 patients (134 intervention, 144 control). Of enrolled patients, 58% died during the study (n=161); mean age was 62.3 years (95% CI, 58.9-65.6 years); 55% were women (n=88). These patients were cared for by 76 of the 91 enrolled clinicians (37 intervention, 39 control); years in practice, 11.5 (95% CI, 9.2-13.8); 57% female (n=43). Medical record review after patients’ death demonstrated that a significantly higher proportion of intervention patients had a documented discussion compared with controls (96% vs 79%, P = .005) and intervention conversations occurred a median of 2.4 months earlier (median, 143 days vs 71 days, P < .001). Conversation documentation for intervention patients was significantly more comprehensive and patient centered, with a greater focus on values or goals (89% vs 44%, P < .001), prognosis or illness understanding (91% vs 48%, P < .001), and life-sustaining treatment preferences (63% vs 32%, P = .004). Documentation about end-of-life care planning did not differ between arms (80% intervention vs 68% control, P = .08). Significantly more intervention patients had documentation that was accessible in the EMR (61% vs 11%, P < .001).
Conclusions and Relevance This communication quality-improvement intervention resulted in more, earlier, better, and more accessible serious illness conversations documented in the EMR. To our knowledge, this is the first such study to demonstrate improvement in all 4 of these outcomes.
High-quality data support multiple clinical benefits of integrating palliative care into routine oncology care. Though these data come largely from the medical oncology literature, data from surgical oncology populations support similar associations between palliative care integration and improved clinical outcomes, all without compromise in survival. This paper will review data supporting palliative care integration into oncology care, with a focus on surgical populations and recommendations for incorporating palliative care into surgical oncology.
Palliative and supportive care education for radiation oncologists in training is essential to deliver comprehensive care to patients. Surveys on palliative care education among radiation oncology program directors and residents demonstrate a disparity in formal teaching and didactics. Integration of formal didactics, communications skills programs, and teaching modules are being piloted at academic centers. A dedicated palliative radiation oncology service has been implemented and the experience evaluated. Future directions to improve resident education in palliative care include improving access and time dedicated to formal didactics, online and interactive modules, rotation in a palliative care service, emphasis on board examinations, and consideration of an advanced palliative care fellowship for radiation oncologists. This is the first review of the available literature reviewing formal palliative education in radiation oncology training programs in the United States.
Introduction: The early integration of palliative care into standard cancer treatment has become a global standard. The Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) has been conducted in Japan, and previous studies have reported that the PEACE workshop was able to improve various palliative care skills of participants. However, whether or not the effects of the program are long-lasting and if the program consequently changed physicians' practice with regard to lung cancer patients have been unclear.
Methods: Web-based surveys, including the palliative care knowledge test (PEACE-Q), the Palliative Care self-reported Practice Scale (PCPS), and the Palliative Care Difficulties Scale (PCDS), were conducted among lung cancer physicians in Japan. The differences in the survey results between participants and non-participants of the PEACE workshop were examined. Results: Among 923 respondents (455 respiratory physicians, 345 pulmonary surgeons, and 123 others), 519 had participated in the PEACE workshop. The total PEACE-Q score was significantly higher in the PEACE workshop participants than in non-participants (28.0 versus 24.5, p<0.0001). The score was significantly higher in respiratory physicians than in pulmonary surgeons (27.4 versus 25.5). The total PCPS and PCDS scores were also significantly better in workshop participants than in non-participants (71.8 versus 67.1 and 34.3 versus 36.9, respectively), although some domains of PCDS were similar between the groups. Conclusion: The PEACE program improved the knowledge and practices with regard to palliative care and resolved difficulties associated therewith among lung cancer physicians. In regions where palliative care specialists are insufficient, such educational programs may be effective.
Cancer is a leading cause of death in Australia and is also the leading cause of disease burden as survivorship continues to improve. Given the prevalence of oncology patients in the community, it is likely to be a condition encountered by every junior doctor. Despite this oncology and in conjunction with that, palliative care has not been a core component of medical curriculum until recently. This means that the junior doctor experience is often complicated by lack of knowledge, poor understanding of the disease process, treatment options and complications and therefore makes managing these patients complicated and often an uncessarily stressful process. This reflective article explores current issues in cancer education, a reflection and comparison between pre- and post-internship experience and offers some potential solutions to these issues.
BACKGROUND: Palliative radiation therapists (PRTs) have been integrated in varying capacities into outpatient palliative radiation therapy (RT) services across Canada for over 2 decades. At our institution, PRTs have developed an essential role over 11 years within a palliative radiation oncology (PRO) clinic that focuses on integrating symptom management with radiation oncology assessment for palliative RT. PRTs have had direct clinical, technical, research, and administrative involvement as the clinic evolved from a pilot in 2007 supporting one half-day per week to the current model of five full clinical days.
METHODS: Using collaborative reflection, we explored the PRTs' experience and insight. Twelve PRTs who contributed to the PRO clinic for varying lengths of time from 2007 through to 2016 were invited to participate in the development of a collective expression of the PRT experience. Seven PRTs consented to completing an electronic survey consisting of fifteen open-ended questions regarding individual roles and perspectives relating to our PRO clinic. Survey answers were enhanced by semistructured interviews when needed for clarification. Responses were contextualized within the operational changes to our multidisciplinary clinical model, from pilot to integrated service.
RESULTS/DISCUSSION: Five respondents answered all of the questions. From the narratives, PRT roles and responsibilities were outlined and their insights and reflections included to contextualize clinical changes. Four phases of the clinic were identified and elucidated. Beginning in January 2007, three PRTs staffed a multidisciplinary clinical pilot one half-day per week for single-fraction, symptomatic bone metastases. The clinic has now evolved through various iterations to the current model with four PRTs sharing a "navigator" role with two registered nurses five full clinic days per week. The range of PRT experiences, responsibilities, and challenges encountered reflected specific clinical and operational conditions.
CONCLUSION: As our clinical service model evolved from short-term pilot to fully integrated departmental service, so did the PRT role. PRTs contributing to RT as part of a multidisciplinary model support and advance nontraditional involvement in the holistic care of patients with advanced cancer.
BACKGROUND: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers.
OBJECTIVE: The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at the time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team.
DESIGN: A series of systematic questions were presented to all caregivers (if present) and children who were seven years of age or older at the time of initial consultation with pediatric palliative care.
RESULTS: One hundred twenty-two consecutive children/caregiver dyads were given the survey. One hundred seven of 108 (99%) eligible caregivers and 83 of 97 (86%) eligible children completed the survey. Lack of appetite (child—72/83, 87%; caregiver—89/107, 83%) and pain (child—71/83, 86%; caregiver—86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.001) more frequently than children. Referring medical teams significantly underdiagnosed psychological and other less clinically evident symptoms such as lack of appetite, fatigue, and sleep disturbance (p < 0.001).
CONCLUSIONS: Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer referred to palliative care should become a true standard of care.
Objectif: Lâ€™article documente le vécu et les représentations sous-jacentes aux soins cliniques pour comprendre le suivi des protocoles ainsi que lâ€™adaptation des soignés et leurs familles.
Matériel et méthodes: Quatre études de cas et 12 entretiens avec les soignants dont huit entretiens avec le personnel au niveau clinique et quatre entretiens avec des acteurs de soins en dehors de la biomédecine ont été menés. Pour lâ€™intelligibilité de notre propos, lâ€™approche constructiviste sâ€™est avérée la mieux appropriée.
Résultats: Au début de toute maladie les familles sâ€™en font une représentation au travers des modèles explicatifs de leurs sociocultures et leurs propres expériences qui oscillent sur des pôles naturaliste et spiritualiste. Par conséquent, le recours à plusieurs avis médicaux est lâ€™attitude qui sâ€™en dégage. Au Cameroun, lâ€™éducation thérapeutique des patients qui permet de socialiser les soignés et leurs familles aux situations cliniques est davantage un échange informatif dépendant des dimensions affectives, cognitives ou conatives de la relation soignant/soigné. Elle ne devient efficiente quâ€™au moment où lâ€™éducation culturelle du thérapeute lui permet de desceller les non-dits et les médiateurs de cette relation, afin dâ€™établir des échanges négociés, partagés et mutuellement compris.
Conclusion: La maîtrise et le suivi assidu des protocoles thérapeutiques dans les soins palliatifs pédiatriques en Afrique subsaharienne interpellent le rôle du médecin qui sans être un spécialiste des cultures, se doit de ne pas faire fi des médecines parallèles qui sont à la portée de leurs patients et leurs familles et de collaborer avec eux dans les prises de décisions liées à leurs orientations thérapeutiques.
Objectif de lâ€™étude : Par une étude qualitative, nous avons voulu analyser les conséquences sur lâ€™information reçue de la présence de patients présentant un cancer des voies aérodigestives supérieures à une réunion de concertation pluridisciplinaire comparativement à une processus dâ€™annonce conventionnel.
Patients et méthode : Six hommes ont été interrogés lors dâ€™un entretien individuel, semi-directif et enregistré. Ils ont été répartis en deux groupes : trois nâ€™ayant pas participé à la réunion de concertation pluridisciplinaire et trois y ayant pris part. Après avoir été exactement retranscrits sous forme numérique, les propos de chacun ont été analysés à lâ€™aide dâ€™un logiciel dâ€™analyse sémantique et lexicométrique Tropes®.
Résultats : Les patients des deux groupes sâ€™estimaient bien informés, parfois trop. Lâ€™utilisation fréquente du « je » dans chaque groupe montrait quâ€™ils se sentaient intégrés. Les patients participant à la réunion de concertation pluridisciplinaire en étaient satisfaits mais les informations y étaient davantage condensées, ce qui a pu les surprendre voire les angoisser et leur choix était également plus ouvertement demandé, ce qui a pu être pris pour un manque de certitude de la part des médecins.
Conclusion : Quâ€™ils aient ou non assisté à la réunion de concertation pluridisciplinaire, les patients des deux groupes sâ€™estimaient bien informés. La présence à la réunion de concertation pluridisciplinaire présente lâ€™avantage de pouvoir discuter de lâ€™ensemble des possibilités thérapeutiques et lâ€™inconvénient de trop condenser ces informations qui doivent être reprises dans un second temps avec un médecin. Ce mode particulier du processus dâ€™annonce ne doit pas forcément être généralisé, mais peut être offert à certains patients.
BACKGROUND: Palliative care (PC) workforce shortages have led to a need for primary PC provided by non-specialists. The Care Management by Oncology Nurses (CONNECT) intervention provides infusion room oncology nurses with training and support to provide primary PC.
AIMS: To describe nurses' perspectives on the personal and professional impact of training and provision of primary PC as part of CONNECT.
METHODS: This qualitative study consisted of in-depth telephone interviews with 11 nurses at oncology practices in Pennsylvania. Data was analysed using qualitative content analysis.
FINDINGS: Nurses reported a sense of personal and professional fulfillment from providing primary PC, while noting the risk of increased emotional attachment to patients. Participation improved nursing communication skills. A supportive workplace helped to minimise stress related to incorporating primary PC into busy treatment schedules.
CONCLUSION: Providing primary PC challenges the task-oriented paradigm of nursing practice and will potentially alter the professional roles and workloads of infusion room nurses.
Value-based care model has been evolving to organize medical services around the patient and provide the full cycle of care for a medical condition. The full cycle of care model encompasses inpatient, outpatient, rehabilitation as well as supportive care such as palliative care and nutrition support. Cancer rehabilitation and palliative care have emerged as two important parts of value-based practice for oncology patients. More clinical evidence suggests that early intervention of oncology rehabilitation program and palliative care are likely to improve the patient outcome and reduce the overall medical cost for the patient and his or her family as well as for medical service providers. Although interest has been raised in Chinese oncologists, but effectiveness of incorporating these two services in clinical practices has not been adequately demonstrated. An understanding of scope of cancer rehabilitation and palliative care may help facilitate the integration of both into the oncology care continuum in efforts to improve patients' physical, psychological, cognitive, functional health and quality of life.