Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
Background: Dyspnea is a common, very distressing symptom in advanced cancer patients that challenges them, their relatives, and healthcare professionals. This narrative review summarizes important literature dealing with the evidence for opioids, benzodiazepines, oxygen, and steroids for treating dyspnea in advanced cancer patients.
Methods: A selective literature search was undertaken in PubMed, Embase, and the Cochrane Library and extended with literature from the reference lists of included studies up to April 2016. Inclusion criteria were that patients were suffering from advanced cancer and were receiving either opioids, benzodiazepines, corticosteroids, or oxygen. The outcome of interest was the reduction of dyspnea measured via a visual analogue scale (VAS), a numerical rating scale (NRS), or a Borg scale. This narrative review describes in detail the findings of 13 studies.
Results: Nine studies deal with the effectiveness of opioids for reducing dyspnea in advanced cancer patients. Five of these found a significant benefit to the use of opioids compared to a placebo. Three found no significant improvements, and two favored combinations of opioids and benzodiazepines. Few high-quality studies were available that used benzodiazepines (n = 3, no difference, significant improvement with midazolam + morphine, significant difference for midazolam) or oxygen (n = 2, both without significant difference). Only one study examined treating dyspnea with steroids in patients with advanced cancer, and that study indicated a benefit of steroids compared to a placebo.
Conclusions: Opioids are the drug of choice for treating refractory dyspnea in advanced cancer patients. Neither benzodiazepines nor oxygen showed significant benefit. In addition, there is insufficient literature available to draw a conclusion about the effectiveness of steroids for treating persistent dyspnea in advanced cancer patients.
Cancer is the most common cause of mortality worldwide. Although recent advances of multiple modality cancer management have significantly improved the cure and control rates, a significant proportion of patients are still refractory to the standard and available treatments. Early initiation of palliative care can reduce cancer suffering, improve health-related quality of life and possibly prolong survival. It also allows patients and their caretakers to perceive the trajectory of their cancer, so that better and advanced care planning can be contemplated and implemented. The traditional beliefs and perceptions of cancer also differ significantly between the East and the West, which may also affect the preferential approach to palliative care. This review provides an overview of palliative care services in Hong Kong, as compared with other parts of the world. In addition, we shall also explore how cancer perceptions affect the decision-making on palliative care.
Pancreatic cancer is a highly lethal disease with a dismal prognosis. It will probably become the second leading cause of cancer-related death within the next decade in Western countries. Over 80% of patients undergo palliative treatment for unresectable pancreatic cancer due to locally advanced disease or metastases. Those patients often develop gastric outlet obstruction (GOO), obstructive jaundice and pain during the course of their disease. Symptoms such as vomiting, anorexia, pruritus and jaundice will impact the quality of life (QOL) and could delay the administration of the chemotherapy. Palliative therapy in pancreatic cancer aims to relieve the symptoms durably and to improve the QOL. Palliative surgery was traditionally considered as a gold standard with the "double by-pass" including biliary-digestive and gastro-jejunal anastomosis. However, since the development of endoscopic stenting and minimally invasive surgery, the choice of the best modalities remains debated. While there is still a place for surgical gastrojejunostomy (GJ) in case of duodenal or GOO, endoscopic biliary stenting during endoscopic retrograde cholangiopancreatography (ERCP) is now accepted as the gold standard in case of obstructive jaundice. In pain management, endoscopic ultrasound guided or percutaneous celiac plexus neurolysis is recommended. The selection of the best technique should consider the effectiveness and the morbidity of the treatment, the performance status of the patient and the disease stage. While endoscopic stenting is associated with earlier recovery and shorter length of stay, recurrence of symptoms and reintervention are less frequent after palliative surgery. Finally, controversy exists on whether to perform prophylactic palliative surgery in the absence of symptoms when unresectable disease is discovered during surgical exploration.
Head and neck cancer affects vital functions of speech, swallowing, breathing, and appearance. Overall survival remains poor and symptom burden is high for both patients with incurable disease at the end of life and for long-term survivors. Early and concurrent palliative care helps guide treatment decision making and support quality of life during and after treatment. Both narrative competence and directive counsel can affect the concordance of patient goals and tolerance of treatment and outcomes.
Providing care to cancer patients in resource-poor settings often demands complex trade-offs regarding resource allocation. It is estimated that over 60% of all cancer deaths worldwide occur in low- and middle-income countries, where channels to care and appropriate symptom management interventions are overstressed or obsolete. Concepts of distributive justice underlie much of global health policy. As appetites for expanding global palliative care services increase, so do questions of fair and culturally appropriate distribution. The ethical principle of distributive justice underpins questions of resource allocation at a fundamental level. One of the most challenging concepts for health care workers immersing in cross-cultural contexts is the idea that ethics are somewhat malleable; they shape and are shaped by the unique sociopolitical, economic, intracultural, and power dynamics of a particular setting. In this article, we use the case of a young woman diagnosed with terminal cancer in an underserved community in rural Uganda to illustrate the conflicting concepts of fairness, which dictate distribution of scarce resources in low- and middle-income countries. Notions of distributive justice vary across cultural, societal, and even individual norms, with some definitions allowing for discrimination based on merit or need. Resource allocation in the absence of cultural humility or a genuine willingness to understand decision-making priorities in a given culture can contribute to inequity and may have harmful consequences.
Palliative care (PC) seeks to improve the quality of life for patients facing serious illness. Several oncology organizations have guidelines about PC, reflecting the need to integrate PC into standard oncology care. Many surgical patients do not receive PC despite the need for these services and established surgical PC competencies. Recent educational and research efforts reveal increased appreciation of the need and benefit of integrating PC services with cancer care in general, and surgical care, specifically.
Malignant ascites (MA) carries a poor prognosis. It can have a significant impact on quality of life (QOL), with increasing abdominal distention, pain, and dyspnea. Diuretics typically do not work well for MA. Paracentesis is effective in providing temporary symptom relief but requires frequent repeat procedures. Options for durable symptom management include indwelling catheters, peritoneal ports, peritoneovenous shunts, intraperitoneal (i.p.) catumaxomab, and hyperthermic i.p. chemotherapy. These interventions do not necessarily improve overall survival but may improve QOL.
Unresectable pancreatico-biliary cancers frequently cause biliary obstruction. Symptomatic management of biliary obstruction is most commonly accomplished with percutaneous or endoscopic drainage. When Nonsurgical means have been exhausted, effective surgical palliation may be performed by way of choledochojejunostomy.
PURPOSE: Despite clear benefits of early integration of palliative care (PC) and oncology, concerns remain about negative perceptions of PC. Our aim was to explore current knowledge and perceptions of PC in cancer patients.
METHODS: We conducted a prospective, cross-sectional survey. A 16-item questionnaire was distributed to all cancer patients (N=103) upon admission to the oncology ward of an Australian tertiary academic hospital. Chi-squared test was used to examine for significant factors related to patients' perceptions.
RESULTS: Ninety-six patients (93%) completed the questionnaire; 76% had metastatic cancer. We explored the following domains: Experience and knowledge: 76% had heard of PC; 21% had received PC. Self-rated PC knowledge was varied. Forty-five percent believed that PC was only associated with EOLC; those more likely to disagree had received PC services (p=0.039). Integration of PC and oncology: Majority believed that they could receive oncology care (86%) and anti-cancer treatment (81%) whilst receiving PC. Those who had heard of PC and with better self-rated knowledge were more likely to believe that they could receive concurrent anti-cancer treatment (p=0.005, p=0.045, respectively). Feelings: 77% felt comforted with PC involvement; this was significantly associated with older age (p=0.047) and understanding that oncology (p<0.005) and anti-cancer treatment (p=0.013) could continue. However, some felt frightened (40%) and hopeless (29%) about referral to PC. Fifty percent felt more comfortable with referral to 'supportive care' services (versus PC).
CONCLUSIONS: Our survey demonstrates reasonable understanding and relatively positive feelings about PC, associated with experience and knowledge. Nonetheless, there is ongoing need for better patient and public education about PC.
Objective: Little data about the management of drugs in terminally ill palliative care cancer patients is available. The present study aimed at describing the evolution of anticancer and non-anticancer treatments (NACTs) in cancer patients in palliative care units. The second objective was to identify factors leading to the medical decision to withdraw or not NACTs.
Methods: Data from 1,091 cancer patients hospitalized in palliative care units were prospectively collected in 2010-2011, through a multicenter, observational French cohort.
Results: The median overall survival after admittance in palliative care units was 15 days. Specific anticancer treatments were systematically stopped in the first 24 h in palliative care units, but for 4.5% of patients. Regarding NACTs, patients were heavily treated with strong opioids (74%), corticosteroids (51%), and antidepressants (21.8%) until death. Antiulcer agents (63.4%), antibiotics (25.7%), thrombosis prevention (21.8%), antidiabetics (7.6%), and transfusions (4%) were often also continuously prescribed. In multivariate analysis, ECOG PS 4 was an independent predictor of continuous prescription of morphine and an independent predictor of discontinuation of corticosteroids, proton-pump inhibitors, antidiabetics, and preventive anticoagulant therapy. Infection symptoms independently predicted continuous prescription of paracetamol. Paralysis and cancer palpable mass independently predicted corticosteroid withdrawal. Brain metastases independently predicted antiulcer withdrawal. Hemorrhage independently predicted preventive anticoagulant withdrawal. Availability to a venous access independently predicted paracetamol and antiulcer continuous prescriptions. Co-prescriptions independently predicted continuous prescriptions (antibiotics with antiulcer, antifungals with antibiotics) or withdrawal (preventive anticoagulant with antiplatelets and antifungals).
Conclusions: NACT prescription remained commonplace in terminally ill palliative cancer patients, although their benefit is questionable.
Introduction: Today, new health care models are being proposed with the aim of reducing hospital beds and providing services in primary facilities and homes. These models are developed with the focus on the patients and towards their self-management and self-accomplishment of the activities. Among these, Mobile Health Technology seems to be appropriate for making a new model in palliative care and in different types of care, in general. Palliative care Application (app)can pave the way for promoting the patients' knowledge and thus improving their quality of life, which, in turn, can provide appropriate care at the end of the patients' life.
Aim: This study endeavored to develop the initial version of Mobile Application for cancer Palliative care for the purpose of improving the quality of Iranians' life.
Methods: A mixed method study was conducted in three Phases as follows: 1) comparative study of current mobile applications; 2) developing an object-oriented conceptual model for mobile apps; and 3) developing the initial version of Ghasedak (Ghasedakis the Persian word stand for "Dandelion") approved for production.
Results: Ghasedak was developed for the appropriate cancer self-care, with such functionalities as user training; including cancer definition, cancer factors, its signs and symptoms, types, prevention, cure, adherence to the constraints, strategies for reducing anxiety and overcoming fear, definition and importance of palliative care, management of physical, psychological, social as well as spiritual complications. Ghasedak also includes Clinicians appointment reminds, personal health, user guide, application setting, and patient notes.
Conclusion: Ghasedak was developed in compliance with Iranian experts' opinions. It seems it would be of help in self-care of patients with needed to palliative care.
Objective: The aim of this study is to assess the quality of life of caregiver's. The study was conducted at the RABAT National Institute of Oncology in MOROCCO.
Results: 120 patients on the palliative phase of advanced cancer were included. Severe fatigue was observed in 64.2% of patients with an average of 90.55±14.7. There was a positive association between functional dimensions and overall quality of life and a negative association between symptoms and overall quality of life. Patients under 30 years had a lower quality of life. According to the multi-varied analysis, physical function, emotional functioning and fatigue were significant predictors of Health related quality of life/overall quality of life (p<0.05).
Background: Palliative care (PC) improves the quality of life of patients with advanced cancer. Our aim was to describe PC referral among patients with advanced cancer, and associated outcomes in an academic medical centre.
Methods: We reviewed the medical records of 536 inpatients with cancer who had died in 2010. Our retrospective study compared patients who accessed PC services with those who did not. Statistical analysis was conducted using non-parametric tests due to non-normal distribution. We also conducted a multivariate analysis using a logistic regression model including age, gender, type of cancer and metastatic status.
Results: Out of 536 patients, 239 (45%) had PC referral. The most common cancer types were respiratory (22%) and gastrointestinal (19%). Patients with breast cancer (OR 23.76; CI 6.12 to 92.18) and gynaecological cancer (OR 7.64; CI 2.61 to 22.35) had greater PC access than patients with respiratory or haematological cancer. Patients referred to PC had significantly less chemotherapy in the last 2 weeks of life than non-referred patients, with 22 patients (9%) vs 59 (19%; p<0.001). PC-referred patients had significantly fewer admissions to intensive care units in the last month of life than non-referred patients, with 14 (6%) vs 58 (20%; p<0.001).
Conclusions: There was a large variation in access to PC according to the type of cancer. There is a need to improve collaboration between the PC service and the respiratory, cancer and haematology specialists. Further research will be required to determine the modality and the impact of this collaboration.
Aim: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.
Methods: Physicians from the six cancer centres in Sweden took part in focus group discussions from December 2017 and May 2018 and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.
Results: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.
Conclusion: Physicians working in paediatric oncology perceived challenges and facilitating factors in their communication with families when a cure was not an option. Training to overcome communication issues could support the early integration of palliative care and curative treatment.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
Background: People with advanced cancer face difficulties with their everyday activities at home that may reduce their health-related quality of life. To address these difficulties, we developed the ‘Cancer Home-Life Intervention’.
Aim: To evaluate the efficacy of the ‘Cancer Home Life-Intervention’ compared with usual care with regard to patients’ performance of, and participation in, everyday activities, and their health-related quality of life.
Design and intervention: A randomised controlled trial (ClinicalTrials.gov NCT02356627). The ‘Cancer Home-Life Intervention’ is a brief, tailored, occupational therapy–based and adaptive programme for people with advanced cancer targeting the performance of their prioritised everyday activities.
Setting/participants: Home-living adults diagnosed with advanced cancer experiencing functional limitations were recruited from two Danish hospitals. They were assessed at baseline, and at 6 and 12 weeks of follow-up. The primary outcome was activities of daily living motor ability. Secondary outcomes were activities of daily living process ability, difficulty performing prioritised everyday activities, participation restrictions and health-related quality of life.
Results: A total of 242 participants were randomised either to the intervention group (n = 121) or the control group (n = 121). No effect was found on the primary outcome (between-group mean change: -0.04 logits (95% confidence interval: -0.23 to 0.15); p = 0.69). Nor was any effect on the secondary outcomes observed.
Conclusion: In most cases, the ‘Cancer Home-Life Intervention’ was delivered through only one home visit and one follow-up telephone contact, which not was effective in maintaining or improving participants’ everyday activities and health-related quality of life. Future research should pay even more attention to intervention development and feasibility testing.
CONTEXT: Morphine is recommended as the first-line pharmacological therapy for cancer dyspnea. However, the detailed practice of morphine has not been evaluated, and consensus about other opioids for cancer dyspnea has not been established.
OBJECTIVES: To explore the physician-reported practice of opioid for cancer dyspnea.
METHODS: Nationwide mail-questionnaire survey was conducted among 536 Japanese certified palliative care physicians. We randomly selected 268 and asked the following: 1) how the physicians themselves initiate and use morphine for cancer dyspnea, 2) opioid choice for dyspnea in patients who have already used opioid other than morphine regularly, and 3) opioid choice for dyspnea in patients with various degrees of renal impairment in their daily practice.
RESULTS: Overall, 192 physicians responded (response rate, 71.6%). The major (58.3%) practice of initiating morphine was "immediate-release morphine as needed" in opioid-naïve patients and the mean % increase when they titrate morphine for cancer dyspnea was 29.4±11.3% of the baseline dose. Although "titrate baseline oxycodone" was the most frequent (42.3%) for low-to-moderate-dose regular oxycodone cases, "stepwise switch to morphine" (30.0%) and "add morphine on baseline oxycodone" (27.1%) were the more frequent practices for high-dose regular oxycodone. Regardless of the baseline dose, "add morphine on baseline fentanyl" was the most frequent practice for regular transdermal fentanyl cases. Oxycodone was the most frequent choice in renal insufficiency cases, regardless of its degree.
CONCLUSIONS: Among Japanese palliative care physicians, using oxycodone for cancer dyspnea was relatively popular practice, while fentanyl was not. Oxycodone was the most preferred opioid for cancer dyspnea in the setting of renal insufficiency among Japanese palliative care physicians. We should conduct studies to confirm the safety and effectiveness of these opioid practices for cancer dyspnea.
BACKGROUND: Factors facilitating/hindering concordance between preferred and received life-sustaining treatments may be distorted if preferences and predictors are measured long before death.
AIM: To examine factors facilitating/hindering concordance between cancer patients' preferred and received life-sustaining-treatment states in their last 6 months.
DESIGN: Longitudinal, observational design.
SETTING/PARTICIPANTS: States of preferred and received life-sustaining treatments (cardio-pulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, and nasogastric tube feeding) were examined in 218 Taiwanese cancer patients by a latent transition model with hidden Markov modeling. Multivariate logistic regression modeling was used to examine factors facilitating/hindering concordance between preferred and received life-sustaining-treatment states.
RESULTS: Concordance between preferred and received life-sustaining-treatment states was poor (40.8%, kappa value (95% confidence interval): 0.05 [-0.03, 0.14]). Patients who accurately understood their prognosis and preferred comfort care were significantly more likely to receive preferred life-sustaining treatments before death than those who did not know their prognosis but wanted to know, those who were uniformly uncertain about what life-sustaining treatments they preferred to receive, and those who preferred nutritional support but declined other life-sustaining treatments. Patient age, physician-patient end-of-life-care discussions, symptom distress, and functional dependence were not associated with concordance between preferred and received life-sustaining-treatment states.
CONCLUSION: Prognostic awareness and preferred states of life-sustaining treatments were significantly associated with concordance between preferred and received life-sustaining-treatment states. Personalized interventions should be developed to cultivate terminally ill cancer patients' accurate prognostic awareness, allowing them to formulate realistic life-sustaining-treatment preferences and facilitating their receiving value-concordant end-of-life care.