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: 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.
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: 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.
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
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.
We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.
OBJECTIVES: To describe and compare self-perceived end-of-life (EOL) knowledge, attitudes, behaviors, and practices of intensive care unit (ICU) nurses compared to oncology nurses.
SAMPLE & SETTING: 126 Israeli nurses (79 oncology nurses and 47 ICU nurses) who were members of the Israel Association of Cardiology and Critical Care Nurses and the Israeli Oncology Nurses Organization.
METHODS & VARIABLES: This cross-sectional study used an online survey to gather demographic information, clinical setting, and study measures (EOL knowledge, attitudes, behaviors, and practices).
RESULTS: Oncology nurses and ICU nurses showed moderate levels of self-perceived knowledge and attitudes toward palliative care; however, their self-reported behaviors were low. Oncology nurses scored slightly higher than ICU nurses on knowledge and attitudes but not behaviors, although the difference was not statistically significant.
IMPLICATIONS FOR NURSING: Contrary to the current authors' expectations, oncology nurses and ICU nurses have similar levels of knowledge, attitudes, and behaviors regarding palliative care. Nurses in both settings need to be better trained and empowered to provide such care.
Objectives: To train and support oncology advanced practice RNs (APRNs) to become generalist providers of palliative care.
Sample & Setting: APRNs with master’s or doctor of nursing practice degrees and at least five years of experience in oncology (N = 165) attended a National Cancer Institute–funded national training course and participated in ongoing support and education.
Methods & Variables: Course participants completed a precourse, postcourse, and six-month follow-up evaluation regarding palliative care practices in their settings, course evaluation, and their perceived effectiveness in applying course content in their practice.
Results: The precourse results showed deficiencies in current practice, with a low percentage of patients having palliative care as part of their oncology care. Barriers included lack of triggers that could assist in identifying patients who could benefit from palliative care. Six-month postcourse data showed more APRNs participating in family meetings, recommending palliative care consultations, speaking with family members regarding bereavement services, and preparing clinical staff for impending patient deaths.
Implications for Nursing: APRNs require palliative care training to integrate this care within their role. APRNs can influence practice change and improve care for patients in their settings.
Background: We conducted a multicenter, randomized trial of early integrated palliative and oncology care in patients with advanced cancer to confirm the benefits of early palliative care (PC) seen in prior single-center studies.
Methods: We randomly assigned patients with newly diagnosed incurable cancer to early integrated palliative and oncology care (n = 195) or usual oncology care (n = 196) at sites through the Alliance for Clinical Trials in Oncology. Patients assigned to the intervention were expected to meet with a PC clinician at least monthly until death, whereas usual care patients consulted PC on request. The primary endpoint was the change in quality of life from baseline to week 12 per the Functional Assessment of Cancer Therapy-General (FACT-G). Secondary outcomes included anxiety, depression, and communication about prognosis and end-of-life care.
Results: Due to significant morbidity and a high proportion of measures that were not completed within the protocol window or for unknown reasons, the rate of missing data was high. We anticipated that 70% of patients (n = 280) would complete the FACT-G at baseline and week 12, but only 49.3% (n = 193/391) completed the measure. Delivery of the intervention was also suboptimal, as 14.9% (n = 29/195) of intervention patients had no PC visits by week 12. Intervention patients reported a mean 3.35 (standard deviation [SD] = 14.7) increase in FACT-G scores from baseline to week 12 compared with usual care patients who reported a 0.12 (SD = 12.7) increase from baseline (p = 0.10).
Conclusion: This study highlights the difficulties of conducting multicenter trials of supportive care interventions in patients with advanced cancer. Clinical Trials Registration: NCT02349412.
OPINION STATEMENT: As palliative care (PC) continues its rapid growth, an emerging body of evidence is demonstrating that its approach of interdisciplinary supportive care benefits many patient populations, including in the oncology setting. As studies and data proliferate, however, questions persist about who, what, why, when, and how PC as well as the ideal time for a PC consult and length of involvement. When comparing outcomes from chemotherapy trials, it is important to consider the dosing regimens used in the various studies. In the same way, it is important to account for the "dose" of the PC interventions utilized across studies, and apples to apples comparisons are needed in order to draw accurate conclusions about PC's benefits. Studies which include a true interdisciplinary PC intervention consistently show improvements in patient quality of life, as well as cost savings, with further study needed for other outcomes. These benefits cannot be extrapolated to care which may be labeled "palliative care," but which does not meet the standard of true interdisciplinary PC. The ultimate question is: Does PC indeed improve outcomes?
Background: Communication in do not resuscitate (DNR) and artificial nutrition and hydration (ANH) at the end of life is a key component of advance care planning (ACP) which is essential for patients with advanced cancer to have cares concordant with their wishes. The SOP model (Shared decision making with Oncologists and Palliative care specialists) aimed to increase the rate of documentation on the preferences for DNR and ANH in patients with advanced cancer.
Methods: The SOP model was implemented in a national cancer treatment center in Taiwan from September 2016 to August 2018 for patients with advanced cancer visiting the oncology outpatient clinic. The framework was based on the model of shared decision making as “choice talk” initiated by oncologists with “option talk” and “decision talk” conducted by palliative care specialists.
Results: Among 375 eligible patients, 255 patients (68%) participated in the model testing with the mean age of 68.5 ± 14.7 years (mean ± SD). Comparing to 52.3% of DNR documentation among patients with advanced cancer who died in our hospital, the rate increased to 80.9% (206/255) after the decision talk in our model. Only 6.67% (n = 17) of the participants documented their preferences on ANH after the model. A worse Eastern Cooperative Oncology Group Performance Status was the only statistically significant associating factor with a higher rate of DNR documentation in the multiple logistic regression model.
Conclusions: The SOP model significantly increased the rate of DNR documentation in patients with advanced cancer in this pilot study. Dissemination of the model could help the patients to receive care that is concordant with their wishes and be useful for the countries having laws on ACP.
Over the past decade, substantial progress has been made in building the evidence base for integrating palliative care with cancer care and increasing the availability of palliative care services for patients with cancer. Multiple clinical trials have evaluated proactive care models in which patients begin to receive palliative care services on the basis of an initial diagnosis of advanced cancer or disease progression. The goal of these delivery models is to improve patients’ experiences and outcomes throughout their illness course rather to wait to involve palliative care until they are struggling with uncontrolled symptoms. These studies have demonstrated that earlier and longitudinal involvement of palliative care improves patients’ quality of life, mood, and satisfaction with care. Several studies also have shown that earlier involvement of palliative care enhances the experience of patients’ caregivers and leads to improved communication and delivery of end-of-life care. As these data emerged, ASCO and several other national organizations endorsed the early involvement of palliative care for patients with advanced cancer, which has substantially transformed the practice of palliative care in oncology.
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology-encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases-is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.
Palliative care began in academic centers with specialty consultation services, and its value to patients, families, and health systems has been evident. The demand for palliative care to be integrated throughout the cancer trajectory, combined with a limited palliative care workforce, means that new models of care are needed. This review discusses evidence regarding the need for integration of palliative care into routine oncology care and describes best practices recognized for dissemination of palliative care. The available evidence suggests that palliative care be widely adopted by clinicians in all oncology settings to benefit patients with cancer and their families. Efforts are needed to adapt and integrate palliative care into community practice. Limitations of these models are discussed, as are future directions to continue implementation efforts. The benefits of palliative care can only be realized through effective dissemination of these principles of care, with more primary palliative care delivered by oncology clinicians.