Context: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
Objectives: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
Methods: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
Results: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Conclusion: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
Background: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology.
Methods: this study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer =6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care).
Results: The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment.
Conclusions: This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.
Background: Nurses feature prominently in promoting advance care planning (ACP), but only a limited amount of relevant research has been conducted from the nurses' viewpoint, and little is known about the nurses' knowledge of and their willingness to promote ACP in China.
Aims: The aims of this study were to investigate oncology nurses' knowledge of and their willingness to promote ACP, and to explore associated factors.
Methods: A multi-centre study was conducted to investigate 350 nurses in the oncology departments of four university hospitals in southwestern China. Cluster sampling was used in data collection, which involved three categories of questionnaires concerning demographic characteristics, knowledge about ACP and willingness to promote ACP. Chi-squared tests and multiple linear regression were employed in data analysis.
Results: Some 293 valid questionnaires were collected, among which, 60.1% of respondents never received palliative care education, 89.1% never received training about ACP and 72.7% had not even heard of ACP. Nurses with higher position titles ( 2=18.41, p<0.001) and longer working experience ( 2=12.25, p=0.001) were more likely to have received palliative care education; nurses with higher educational background levels ( 2=12.91, p<0.001), higher position titles ( 2=9.77, p=0.003) and longer working experience ( 2=7.92, p=0.006) were more likely to have learned about ACP; nurses with higher position titles had more access to relevant training ( 2=5.10, p=0.03). Furthermore, whether the nurse had ‘heard about ACP’ (B=3.113, p=0.018) and ‘received training about ACP’ (B=3.894, p=0.04) were both associated with their willingness to promote ACP.
Conclusions: The findings of this study indicated that oncology nurses were highly inclined to promote ACP, but limited by their lack of knowledge and understanding of it. Therefore, a systematic and adequate training programme about ACP for nurses is an urgent requirement to effectively enhance the implementation of ACP in China.
Evidence of quality of life improvements in patients with advanced-stage cancer has spurred a move towards early integration of palliative care into the outpatient setting. As discussed herein, meaningful and sustained improvements in timely access to palliative care requires commitments to funding, encouraging integration and routinizing referral across care settings. More palliative medicine training positions as well as broader education of clinicians and the public about the benefits of palliative care throughout the disease course are also needed.
BACKGROUND: The working group for palliative medicine within the Comprehensive Cancer Center (CCC) network funded by the German Cancer Aid in Germany has developed and published 14 Standard Operating Procedures (SOPs) for palliative care in CCCs. This study analyzed to what extent these SOPs have been implemented in the clinical routine in the CCC network one year after their publication.
METHODS: An online-based survey on the implementation status, limitations in daily practice and further themes was conducted between April and July 2018. In total, 125 health professionals in specialized palliative care from all 16 CCC locations were invited to participate. The data were analyzed descriptively using SPSS.
RESULTS: The response rate was 52.8%. More than half of the respondents (57.6%) knew about the free availability of SOPs on the CCC network website. The extent to which each SOP was being used actively in practice by the survey respondents ranged from a low of 22.7% (for the "Fatigue" SOP) to a highest of 48.5% (for the "Palliative Sedation" and "Respiratory Distress" SOPs). The respondents became aware of the SOP through recommendations from colleagues, team meetings or from the head of the department. The SOPs "Respiratory distress of an adult palliative patient" and "Palliative sedation" were perceived as the most practically oriented and understandable. Barriers to use SOPs were mainly limited time resources and lack of knowledge of existence and availability.
CONCLUSIONS: In practice, better knowledge about the SOPs and at the same time increased use can be achieved through systematic training or discussion of SOPs in regular team meetings. There is a need to take measures to optimize the implementation in clinical practice.
Background: Palliative care is a specialized approach to symptom management that focuses on supporting patients' physical and psychological quality of life throughout the disease course. In oncology, palliative care has been increasing in utilization. The evidence base for such care is also growing through the use of randomized controlled trials (RCTs). In this review, we aim to integrate the findings from 4 meta-analyses of palliative oncology care RCTs to examine the impact of palliative care on physical and psychological quality of life and survival.
Method: We considered 4 meta-analyses of palliative oncology care RCTs, which each used slightly different methodologies and analyses. Two of the meta-analyses included both outpatient and inpatient populations, whereas the remaining meta-analyses focused specifically on outpatient palliative oncology care.
Results: All 4 meta-analyses reported a robust quality of life advantage for patients randomized to receive palliative care. Two meta-analyses identified a survival advantage, whereas the other 2 detected no survival differences. In 1 meta-analysis that examined high-quality RCTs of outpatient palliative oncology care, it was found that an increased survival probability for palliative care, compared with standard of care, was confined to 6- to 18-month follow-up.
Conclusions: There is a growing evidence base for palliative oncology care, as highlighted by the 4 meta-analyses considered. Such care successfully improves both physical and psychological quality of life for patients with serious illnesses, especially cancer. Clinicians should educate patients and their caregivers about the findings of these meta-analyses. Finally, governmental policies should focus on increasing palliative care access.
PURPOSE: ASCO guidelines recommend palliative care (PC) referral for patients with advanced or metastatic cancer. Despite this, implementation has considerable hurdles. First-year oncology fellows at our institution identified low rates of PC utilization in their longitudinal clinic as a metric needing improvement.
METHODS: A fellow-led multidisciplinary team aimed to increase PC utilization for patients with advanced cancer followed in he first-year fellows' clinic from a baseline of 11.5% (5 of 43 patients, July to December of 2018) to 30% over a 6-month period. Utilization was defined as evaluation in the outpatient PC clinic hosted in the cancer center. The team identified the following barriers to referral: orders difficult to find in the electronic medical record (EMR), multiple consulting mechanisms (EMR, by phone, or in person), EMR request not activating formal consult, no centralized scheduler to contact or confirm appointment, and poor awareness of team structure. Plan-Do-Study-Act (PDSA) cycles were implemented based on identified opportunities. Data were obtained from the EMR.
RESULTS: The first PDSA cycle included focus groups with stakeholders, standardizing referral process via single order set, identifying a single scheduler with bidirectional communication, and disseminating process changes. PDSA cycles were implemented from January to June of 2019. Rates of PC use increased from 11.5% before the intervention to 48.4% (48 of 99 patients) after the intervention.
CONCLUSION: A multidisciplinary approach and classic quality improvement methodology improved PC use in patients with advanced cancer. The pilot succeeded given the small number of fellows, buy-in from stakeholders, and institutional and leadership support. Straightforward EMR interventions and ancillary staff use are effective in addressing underreferrals.
The COVID-19 pandemic will continue to demand more resources than the US medical system has to supply, likely requiring explicit rationing of ventilators, critical and intensive care beds, and medications, including for patients with cancer. ASCO affirms the inherent worth and dignity of each patient affected by cancer and recognizes that cancer is a heterogeneous disease that differs in its prognosis, progression, and treatment among individuals. Therefore, allocation decision processes should not unconditionally deny patients with cancer consideration for access to scarce resources. Oncologists have a vital role to play in caring for and about their patients if resource allocation becomes needed. ASCO makes the following recommendations to guide oncologists.
Background: early involvement of palliative care and advance care planning improves quality of life outcomes and survival for patients with advanced lung cancer, however there are barriers to implementation.
Aims and Methods: A single-centre prospective audit reviewing “Goals of Care” (GOC) form completion and palliative care referrals in an oncology clinic was undertaken with the aim of increasing GOC completion and palliative care referrals for patients with advanced lung cancer. Involved physicians attended a communication skills course and then received a communication-priming interventions. Clinicopathological factors associated with GOC completion and palliative care referral were explored.
Results: 84 patients receiving palliative treatment for advanced lung cancer were enrolled. Clinicopathological factors, such as poorer performance status were associated with higher likelihood of GOC completion (p = 0.018) prior to the intervention. Male sex (p = 0.023), absence of a sensitising EGFR mutation or ALK rearrangement (p = 0.017), type of systemic therapy (p = 0.031) and poorer performance status (p < 0.001) were associated with higher likelihood of palliative care referral. The intervention improved GOC completion (RR 1.29 p = 0.004), however this was not sustained in a follow-up audit (RR 0.98 p = 0.92) and there was no change in palliative care referral rate (RR 2.5, p = 0.16). Predictors of palliative referral following clinical review included age (RR 1.16, p = 0.001), male sex (RR 14.2, p = 0.02) and poorer performance status (RR 1.76, p < 0.001).
Conclusion: communication-priming interventions can improve GOC completion for patients with advanced lung cancer. Further investigation is needed to pursue sustainable options for managing this complex patient group and improve guideline-adherence and patient care.
Objectives: To map current practice regarding discussions around resuscitation across England and Scotland in patients with cancer admitted acutely to hospital and to demonstrate the value of medical students in rapidly collecting national audit data.
Methods: Collaborators from the Macmillan medical student network collected data from 251 patient encounters across eight hospitals in England and Scotland. Data were collected to identify whether discussion regarding resuscitation was documented as having taken place during inpatient admission to acute oncology. As an audit standard, it was expected that all patients should be invited to discuss resuscitation within 24 hr of admission.
Results: Resuscitation discussions were had in 43.1% of admissions and of these 64.0% were within 24 hr; 27.6% of all admissions. 6.5% of patients had a “do not attempt resuscitation” order prior to admission with a difference noted between patients receiving palliative and curative treatment (8.5% and 0.39%, respectively, p < .05). Discussions regarding escalation of care took place in only 29.3% of admissions.
Conclusions: These data highlight deficiencies in the number of discussions regarding resuscitation that are being conducted with cancer patients that become acutely unwell. It also demonstrates the value of medical student collaboration in rapidly collecting national audit data.
Background: Patients with cancer have high symptom burden and unmet needs and therefore can benefit from palliative care. Oncology nurses are consistent providers of care to patients with cancer and can provide palliative care to these patients. However, oncology nurses’ knowledge on palliative care has not been systematically evaluated.
Objective: To synthesize the current state of the science of oncology nurses’ knowledge on palliative care.
Methods: A systematic literature search was completed using PubMed, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO databases using the following key words: (oncology nurs*) AND (knowledge OR attitude OR belief OR perception) and (palliative care OR supportive care OR terminal care OR end-of-life care OR hospice). The quality of identified studies was rated on a 7-point scale using Fineout-Overholt’s hierarchy of evidence.
Results : Twenty studies from 10 different countries were identified and synthesized for this review. Seventeen studies were quantitative, whereas 3 were qualitative studies. Results revealed that oncology nurses lacked knowledge on several aspects of palliative care.
Conclusions : Overall oncology nurses did not possess adequate knowledge on palliative care. Factors influencing oncology nurses’ knowledge on palliative care included nurses’ sociodemographic factors, educational status, years of experience, palliative care education/training, and clinical setting.
Implications for practice : This review provides evidence on gaps of oncology nurses’ knowledge on palliative care and helps inform the design of interventions targeted toward enhancing oncology nurses’ knowledge on palliative care.
Purpose: Most people are familiar with the expression ‘laughter is the best medicine’. By enhancing cognitive flexibility and strengthening relationships, laughter can be considered a holistic care-approach. Yet, in medical oncology, especially the palliative phase, using humour can be considered inappropriate or taboo. We aimed to explore the acceptability and functions of humour and laughter in patients with prolonged incurable cancer.
Methods: This study was performed in a Dutch Comprehensive Cancer Centre. We included four short conversations with patients, eighteen in-depth patient-interviews and eleven observational fieldnotes in which humour was a major topic of the conversation. We further administered an online questionnaire to thirty-three oncology clinicians about their experiences with humour. Qualitative data were thematically analysed. We specifically distinguished between humour and laughter.
Results: Nearly all specialists reported using humour (97%), and all reported sometimes laughing during consultations; 83% experienced a positive effect of laughter. These results were in line with patients’ experiences: Patients noted that humour always stayed alive despite medical difficulties. Apart from this human aspect, patients also used humour to broach difficult topics and downplay challenges. Patients and specialists acknowledged that using humour is sometimes inappropriate, partly because they did not always share the same humour. Laughter, in contrast, was regarded as ‘lighter’ than humour, and could, accordingly, more easily be implemented. Specialists cautioned against patients using laughter to avoid broaching difficult topics.
Conclusion: Many conversations were full of laughter. Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. If applied appropriately, adding shared laughter may help optimize shared decision-making.
Introduction: Early access to cancer palliative care is recommended. Descriptions of structures and processes of outpatient palliative care clinics operated within smaller hospitals are scarce. This paper presents the development and operation of a fully integrated cancer and palliative care outpatient clinic at a local hospital in a rural region of Mid-Norway offering palliative care concurrent with cancer treatment. A standardized care pathway was applied.
Methods: Palliative care is in Norway part of the public healthcare system. Official recommendations recent years point out action points to improve delivery of palliative care. An integrated cancer and palliative care outpatient clinic at a local hospital and an innovative care delivery model was developed and operated in this setting. Patients were recruited for a descriptive study of the patient population. Clinical data were collected by clinical staff and 13 symptom intensities were reported by the patients.
Results: Cancer and palliative care were provided by one team of healthcare professionals trained in both fields. There was a close collaboration with the other departments at the hospital, with its affiliated tertiary hospital, and with community health and care services to provide timely referral, enhanced continuity, and improved coordination of care. Eighty-eight patients were included. Mean age was 65.6 years, the most common cancer diagnoses were digestive organs (22.7%), male genital organs (20.5%) or breast (25.0%), 75.0% had metastatic or locally advanced cancer, 59.1% were treated with non-curative intention and 93.1% had Karnofsky Performance Status = 80%. Median scores of individual symptoms ranged from 0 to 3 (numerical rating scale, 0–10) and 61.0% reported at least one clinically significant symptom rating (= 4).
Conclusion: This delivery model of integrated outpatient cancer and palliative care is particularly relevant in rural regions allowing cancer patients access to palliative care earlier in the disease trajectory and closer to home
Introduction: Health professionals in oncologic and palliative care settings are often faced with the problem that patients stop eating and drinking. While the causes of food refusal are very different, the result is often malnutrition, which is linked to health comorbidities and a high mortality rate. However, the professionals lack the time and knowledge to clarify the cause for each patient. What associations do health professionals have when faced with food refusal?
Objective: To investigate the associations that health professionals in oncological and palliative settings have about denied eating behavior
Methods: A cross-sectional study, starting with an open question focusing professionals’ associations regarding food refusal. The results were inductively analyzed, whereby generic categories were developed. Subsequently, the categories were transformed into quantitative data to calculate the relationships between the categories.
Results: A total of 350 out of 2000 participants completed the survey, resulting in a response rate of 17.5%. Food refusal is primarily associated with physical and ethical aspects and with end-of-life. Half of the participants frequently find that patients refuse to eat. The attitudes show that the autonomy of the patient is the highest good and is to be respected. Even in the case of patients with limited decision-making capacity, the refusal to eat is acceptable.
Conclusion: Clarifying the cause of food refusal requires a great deal of knowledge and is strongly influenced by the associations of health professionals. While the associations have very negative connotations, information and training is needed to make professionals aware of this and to change their associations. With this knowledge and in an interprofessional cooperation, mis-labelling of patient settings can be avoided and fears can be reduced.
Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization.
This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families.
Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis.
Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients’ openness to their own needs).
Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals’ communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.
OBJECTIVE: The "surprise question" ("Would you be surprised if this patient died in the next year?") has been shown to be predictive of 12-month mortality in multiple populations, but has not been studied in gynecologic oncology (GO) patients. We sought to evaluate the prognostic performance of the surprise question in GO patients among physician and non-physician providers.
METHODS: GO providers at two tertiary care centers were asked the surprise question about a cohort of their patients undergoing chemotherapy or radiation. Demographic and clinical information was chart abstracted. Mortality data were collected at one year; relative risk of death at one year based on response to the surprise question was then calculated.
RESULTS: 32 providers (12 MDs, 7 APPs, 13 RNs) provided 942 surprise question assessments for 358 patients. Fifty-seven % had ovarian cancer and 54% had recurrent disease. Eighty-three (24%) patients died within a year. Patients whose physician answered "No" to the surprise question had a 43% one-year mortality (compared to 10% for "Yes"). Overall RR of 12-month mortality for "No" was 3.76 (95% CI 2.75-5.48); this association remained significant in all provider types. Among statistically significant predictors of 12-month mortality (including recurrent disease and >2 prior lines of chemotherapy), the surprise question had the highest RR.
CONCLUSIONS: The surprise question is a simple, one question tool that effectively identifies GO patients increased risk of 12-month mortality. The surprise question could be used to identify patients for early referral to palliative care and initiation advance care planning.
BACKGROUND: Nutrition is a basic patients' need and an important component of nursing. End-of-life cancer patients can experience difficulties in eating and drinking, sometimes requiring artificial nutrition and hydration (ANH). Nurses' knowledge and attitudes greatly influence nursing care. Nurses may lack knowledge of ANH. To date, no study has explored the knowledge and attitudes of oncology and palliative care nurses toward end-of-life ANH.
OBJECTIVE: To describe oncology and palliative care nurses' knowledge of and attitudes toward ANH.
METHODS: A multicenter cross-sectional study was conducted in 7 regions of Italy using the Italian version of the Questionnaire on Knowledge and Attitudes in Providing ANH for Terminal Cancer Patients. Attitudes were divided into benefits and burdens of providing ANH. Data were analyzed by descriptive statistics.
RESULTS: High percentages of oncology and palliative care nurses showed reasonable knowledge about ANH. More disagreement was evidenced about benefits and burdens of ANH, and lower importance was given to them.
CONCLUSIONS: Some misconceptions and a low level of awareness exist among some nurses about ANH. More nursing studies should be conducted and extended to different care settings. Moreover, guidelines should be reinforced with a nursing perspective to better define nurses' role in the decision-making process on ANH.
IMPLICATIONS FOR PRACTICE: This exploration of nurses' knowledge of and attitudes toward ANH in end-of-life cancer patients can contribute to an understanding of how nurses can be involved in better meeting cancer patients' nutritional needs at the end of life.
Background: Palliative care (PC) referral is recommended early in the course of advanced cancer. This study aims to describe, in an integrated onco-palliative care program (IOPC), patient’s profile when first referred to this program, timing of this referral and its impact on the trajectory of care at end-of-life.
Methods: The IOPC combined the weekly onco-palliative meeting (OPM) dedicated to patients with incurable cancer, and/or the clinical evaluation by the PC team. Oncologists can refer to the multidisciplinary board of the OPM the patients for whom goals and organization of care need to be discussed. We analyzed all patients first referred at OPM in 2011–2013. We defined the index of precocity (IP), as the ratio of the time from first referral to death by the time from diagnosis of incurability to death, ranging from 0 (late referral) to 1 (early referral).
Results: Of the 416 patients included, 57% presented with lung, urothelial cancers, or sarcoma. At first referral to IOPC, 76% were receiving antitumoral treatment, 63% were outpatients, 56% had a performance status =2 and 46% had a serum albumin level > 35 g/l. The median [1st-3rd quartile] IP was 0.39 [0.16–0.72], ranging between 0.53 [0.20–0.79] (earliest referral, i.e. close to diagnosis of incurability, for lung cancer) to 0.16 [0.07–0.56] (latest referral, i.e. close to death relatively to length of metastatic disease, for prostate cancer). Among 367 decedents, 42 (13%) received antitumoral treatment within 14 days before death, and 157 (43%) died in PC units.
Conclusions: The IOPC is an effective organization to enable early integration of PC and decrease aggressiveness of care near the end-of life. The IP is a useful tool to model the timing of referral to IOPC, while taking into account each cancer types and therapeutic advances.