Introduction : Les personnes atteintes de cancer et vivant à domicile sont de plus en plus en nombreuses. Les proches aidants sont des acteurs importants auprès de la personne malade. Ils sont confrontés, à ce titre, aux douleurs cancéreuses sévères de leur proche. La douleur est l’un des symptômes les plus fréquents en cancérologie, souvent insuffisamment soulagée. L’objectif de cette étude était de mieux connaître la perception qu’ont les proches aidants de leur rôle à domicile, particulièrement vis-à-vis de la douleur liée au cancer et de ses traitements.
Méthode : Une étude qualitative a été menée au moyen d’entretiens semi-dirigés auprès de proches aidants de patients atteints d’un cancer en phase palliative spécifique ou symptomatique et présentant des douleurs nécessitant l’administration d’opioïdes. Les thèmes explorés ont été la communication, l’anticipation, la coordination, l’accompagnement et l’adaptation.
Résultats : Douze entretiens ont été réalisés. La plupart des proches aidants disent se rendre disponibles pour le confort du patient, la surveillance des symptômes et l’usage des opioïdes. Ces derniers sont sources de nombreux questionnements. En outre, les proches aidants se sentent responsables de tout faire et de s’organiser pour faire face à la douleur. Enfin, ils se considèrent comme les mieux placés pour soutenir au quotidien le patient, tant pour les aspects pratiques que socio-affectifs. Les professionnels de santé, en particulier les infirmiers libéraux, sont des éléments importants sur lesquels ils peuvent s’appuyer.
Discussion : L’enjeu pour les proches aidants est de conforter leur rôle dans le soulagement des douleurs du malade à domicile. Communiquer, coordonner les différents acteurs et participer aux prises de décision sont les moyens d’y parvenir mais ces fonctions sont variables dans le temps. Il convient de trouver l’équilibre dans la charge qui leur incombe. Cela invite les professionnels à être attentifs à leurs besoins en proposant une aide flexible et adaptée à chaque situation.
Immunotherapy using one's own T cells that are genetically engineered to express a chimeric antigen receptor (CAR) is an emerging therapy for hematologic and non-hematologic cancer. CAR T cell therapy has induced rapid and durable clinical responses in otherwise fatal cancers, but is associated with unique, possibly severe, toxicities. This Fast Facts discusses the basics of CAR T cell therapy for clinicians, approved indications, and toxicities.
Yoga was developed >5,000 years ago as a comprehensive system of health and well-being for the mind, body, and soul. The word is believed to derive from the Sanskrit root "yuj" meaning to bind, yoke, union, and/or to concentrate one's attention. In health care, it often serves as a complementary mind-body practice, and it is increasingly being integrated into cancer care. It can be performed in the privacy of one's home through DVD or web-based programs or through group practices led by instructors who are often experienced working with students with medical issues. Most published evidence regarding yoga for seriously ill patients involves breast cancer survivors or breast cancer (stages I-IV) patients undergoing cancer treatment with a preserved functional capacity (ECOG <3). There is limited data examining its effectiveness or feasibility in children or for those with terminal cancer.
Background: Outpatients with cancer commonly have nonmedical opioid use (NMOU) behaviors and use opioids to dull emotional and existential suffering. Buprenorphine is often used for cancer pain due to less reported euphoria when compared to other opioids.
Methods: A retrospective review was done in patients who were prescribed buprenorphine for cancer pain. Pain scores were reported on a Likert pain scale of 1 to 10. Nonmedical opioid use was defined as patients taking opioids for emotional pain at or above the maximum prescribed amount.
Results: For 16 patients, the mean pain score prior to buprenorphine (pain pre) was 8.3 (Standard deviation (Std) 1.6), and the mean pain score on follow-up post-buprenorphine (pain post) was 6.1 (Std 2.3) with a reduction in mean pain score (pain change) of -2.0 (Std 2.9, P = .059). Those patients without NMOU had a pain prescore of 9.5 (Std 1.0) and pain post of 4.3 (Std 2.5) with a mean pain change of -5.0 (Std 1.7, P = .20). The mean pain change in those with chemical coping (-1.3/Std 2.7), illicit drug use (-2.8/Std 1.0), or psychiatric comorbidity (-2.4/Std 2.7) were reduced after buprenorphine, however, not statistically significant. Outpatient rotation to buprenorphine was well tolerated.
Conclusions: The pain score in those patients without NMOU was significantly lower after rotation to buprenorphine than those with NMOU. We deduce that in those with NMOU, it is more challenging to achieve pain relief with buprenorphine. Overall, for all patients, rotation to buprenorphine resulted in a marginally significantly reduced pain score.
Cancer-related incident bone pain is a form of breakthrough pain caused by movement and is most commonly associated with bone metastases. it is often distinguished from other common forms of bone pain such as arthritis or the pain associated from the administration of filgrastim-like products that are usually constant in nature and worse at night. Management of incident bone pain often requires a multimodal approach as the onset of oral immediate release (IR) opioids may be too slow to address a rapid-onset pain elicited by activity. Cancer-related incident bone pain is correlated with a decreased patient-reported quality of life, a reduced functional capacity, as well as increased psychological distress. Although there is not a clear association with the size, location, or number of bone metastasis, ~70% of patients with bone metastases will develop pain.
Background: Tumor fever and infection are common febrile etiologies among advanced cancer patients. To date, only few studies have been conducted to differentiate between tumor fever and infections.
Objective: This study aimed to identify discriminating factors that provide rapid results and are feasible and minimally invasive for discriminating between tumor fever and infection in advanced cancer patients.
Methods: This is a retrospective cohort study. Advanced cancer patients with clinically diagnosed tumor fever or infection, who received medical treatment from palliative care specialists in 10 nationwide Japanese hospitals, were consecutively identified during August 2012 and November 2014. The symptoms, physical findings, blood test results at baseline and during fever, imaging findings, and sociodemographic factors of these patients were retrospectively extracted.
Results: Thirty-three patients with tumor fever and 72 patients with infection were identified. Their mean age was 68.8 years, 68 (64.8%) were men, and the median palliative performance status (PPS) was 50. Statistically significant factors predicting tumor fever by logistic regression analysis were as follows: deterioration of PPS (odds ratio, 0.078), shaking chills during fever (0.067), and change from baseline data of neutrophil/lymphocyte ratio of =5 (0.14).
Conclusions: Shaking chills during fever, and changes from baseline of performance status and white blood cell differentiation can be useful to differentiate between tumor fever and infection among advanced cancer patients. Further confirmatory studies are needed.
Background: Palliative care (PC) teams increasingly care for patients with cancer into survivorship. Cancer survivorship transcends distinctions between acute, chronic, malignant, and nonmalignant pain. Partnering with oncologists, PC teams manage pain that persists after disease-directed treatment, evaluate changing symptoms as possible signs of cancer recurrence, taper opioids and mitigate risk of opioid misuse, and manage comorbid opioid use disorder (OUD). While interdisciplinary guidelines exist for pain management in survivorship, there is a need to develop a conceptual model that fully translates the biopsychosocial framework of PC into survivorship pain management.
Objective: This review frames a model for pain management in cancer survivorship that balances analgesia with the imperative to minimize risk of OUD, recognizes signs of disease recurrence, and provides whole-person care.
Methods: Comprehensive narrative review of the literature.
Results: Little guidance exists for co-management of pain, psychological distress, and opioid misuse in survivorship. We identified themes for whole-person pain management in survivorship: use of opioids and co-analgesic medications to prevent recurrent pain from residual tissue damage following cancer treatment, opioid tapering to the lowest effective dose, utilization of nonpharmacologic psychological interventions shown to reduce pain, screening for and management of OUD in partnership with addiction medicine specialists, maintaining vigilance for disease recurrence, and engaging in shared medical decision making.
Conclusions: The management of pain in cancer survivorship is complex and requires interdisciplinary care that balances analgesia with the imperative to reduce long-term inappropriate opioid use and manage OUD, while maintaining therapeutic presence with patients in the spirit of PC.
A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients.
Objective: End-of-life cancer care imposes a heavy financial burden on patients, their families, and their health insurers. The aim of this study was to explore the 8-year (2004-2011) trends in health-care costs for Taiwanese cancer decedents in their last month of life and, specifically, to assess the association of these trends with hospice care.
Materials and Methods: We conducted a population-based longitudinal study and analyzed data from Taiwan's National Health Insurance Research Database. The data consisted of not only claims information - costs of hospitalization and outpatient department visits - but also the associated patient characteristics, catastrophic illness status, hospice patient designation, and insurance system exit date (the proxy for death).
Results: A total of 11,104 cancer decedents were enrolled, and 2144 (19.3%) of these patients received hospice care. The rate of hospice service use increased from 14.9% to 21.5% over 8 years. From 2004 to 2011, the mean health-care cost per day in the last month of life increased 8.2% (from US$93 ± $108 in 2004 to US$101 ± $110 in 2011; P = 0001). We compared three groups of patients who received hospice care for more than 1 month (long-H group), received hospice care for 30 days or less (short-H group), and did not receive hospice care (non-H group). Compared to non-H group, long-H group had a significantly lower mean health-care cost per day during their last month of life (US$85.7 ± 57.3 vs. US$102.4 ± 120) (P < 0001). Furthermore, compared to short-H and non-H groups, patients in the long-H group had lower probabilities of receiving chemotherapy and visiting the emergency department more than once. They also incurred lower health-care costs (US$77.1 ± 58.1 vs. US$92.2 ± 56.0 for short-H group and US$102.4 ± 120 for non-H group) (P < 0001).
Conclusion: Health-care costs in the last month of life are increasing over time in Taiwan. Nonetheless, health-care costs for patients receiving hospice can be as much as 16.3% lower than patients not receiving hospice care. Patients receiving hospice care for more than 30 days also had lower health-care costs than those receiving care for <30 days.
Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions.
Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana.
Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points.
Participants: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12).
Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care.
Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.
CONTEXT: Cancer patients' comfort near the end of life is often undermined by unnecessary and burdensome treatments. There is a need for more research examining racial disparities in end-of-life care, especially in regions with a history of racial discrimination.
OBJECTIVES: To examine whether Black adults received more burdensome end-of-life care than White adults in a population-based data set of cancer decedents in Louisiana, a state with a history of slavery and long-standing racial disparities.
METHODS: This was a retrospective analysis of end-of-life care from the Research Action for Health Network (REACHnet), a regional PCORI-funded database. The sample consisted of 875 White and 415 Black patients with metastatic cancer who died in Louisiana from 2011-2017. We used logistic regression to examine whether race was associated with five indicators of burdensome care in the last 30 days of life: chemotherapy use, inpatient hospitalization, intensive care unit (ICU) admission, emergency department (ED) admission, and mechanical ventilation.
RESULTS: Most patients (85.0%) received at least one indicator of burdensome care: hospitalization (76.5 %), ICU admission (44.1%), chemotherapy (29.1%), mechanical ventilation (23.0%), ED admission (18.3%). Odds Ratios (ORs) indicated that Black individuals were more likely than White individuals to be hospitalized (OR=1.66, 95% CI: 1.21 to 2.28, p=.002) or admitted to the ED (OR=1.57, 95% CI: 1.16 to 2.13, p=.004) during their last month of life.
CONCLUSIONS: Findings have implications for informing healthcare decision making near the end of life for patients, families, and clinicians, especially in regions with a history of racial discrimination and disparities.
Context: There is a lack of consensus about the appropriate moment to assess a potential wish to hasten death (WTHD) in patients with life-threatening illness, despite evidence of its positive appraisal among patients.
Objectives: To evaluate the practical potential and acceptability of questions about the WTHD in the first palliative care (PC) clinical encounter.
Design: A proof-of-concept single-arm unmasked trial.
Subjects: We enrolled 30 advanced cancer patients, 16 inpatients and 14 outpatients in their first PC clinical encounter.
Measurements: We assessed the WTHD using a semistructured interview guide, the Assessment of the Frequency and Extent of the Desire to Die (AFEDD) embedded in a multidimensional needs assessment carried out during the first PC encounter. Information about practical potential [patients consider the assessment (a) important and (b) helpful] and acceptability [patients (a) understand and (b) are not bothered by the questions] was obtained.
Results: Thirty-two patients were approached and 30 (94%) agreed to participate. The WTHD was present in two outpatients and eight inpatients. The question to assess WTHD were well understood by 94% of patients and was considered not bothersome by 87% and quite or very helpful by 80%, regardless of whether they had WTHD.
Conclusions: The results support that clinicians can integrate screening for the WTHD in usual clinical practice within a multidimensional needs assessment. Patient acceptability suggests that this as a part of patient-centered care including in the first PC clinical encounter. Further studies are needed to confirm efficacy and safety in larger and different populations.
This study aimed to investigate actual situations of nursing activities in supporting the transition to homecare settings for end-stage cancer patients and to determine factors related to executing such nursing activities from the perspectives of communication skills and interprofessional collaboration. A cross-sectional study was conducted with 513 nurses who worked at designated cancer care hospitals in Japan. A total of 318 valid responses were obtained (valid response rate: 62.0%). Scores for nursing activities were higher for the following items: sharing information regarding the transition to homecare settings, intentionally engaging with patients after their medical conditions were explained, providing care for families, and understanding a patient's will about the transition to homecare settings. On the other hand, scores were lower for items that were related to guiding juniors and self-improvement. A multiple regression analysis was performed with nursing activities as the dependent variable. 8 factors related to nursing activities were determined: experience in supporting the transition to homecare settings as a primary nurse, contribution to a team (Team Approach Assessment Scale [TAAS]), years of nursing experience, function of a team (TAAS), regulation of interpersonal relationship (ENDCOREs communication skills scale), experience of participation in homecare nursing education or seminars, verbal communication skills for good communication (End-of-life Care Nurses’ Communication Skills scale), and educational background. Future challenges include developing an educational program based on the results of the present study and promoting educational intervention studies.
Background: Neuroleptics are commonly used in palliative care settings. However, adverse events of neuroleptics, known as extrapyramidal symptoms (EPSs), might be overlooked in clinical practice. We conducted this study to explore the prevalence of EPSs in palliative care setting.
Methods: This multicenter, prospective, observational study included patients who 1) were referred to either a specialist palliative care team or a palliative care unit, 2) had a diagnosis of cancer, and 3) were =20 years of age. We investigated the prevalence of EPSs and medications used. The primary outcome was the overall Drug-Induced Extrapyramidal Symptom Scale (DIEPSS) score.
Results: Between November 2015 and October 2016, 149 patients from 5 centers in Japan were enrolled. The median age was 67 years (range: 21–88 years) and the study population included 81 men (54.4%). The cancer types included lung (55 patients, 36.9%), upper gastrointestinal tract (5, 3.3%), hepatobiliary (19, 12.8%); breast (12, 8.1%); head and neck (10, 6.7%), gynecologic (10, 6.7%), genitourinary (10, 6.7%), and others (28, 18.8%). The median Karnofsky performance status was 60 (20–100). Most patients (86.6%) did not experience delirium. Thirty-nine (26.2%) patients received one or more EPS-inducing medications. EPSs occurred in 4 (2.7%) patients with a cutoff score of 5 points for 5 parkinsonism items in DIEPSS.
Conclusion: A lower frequency (<3%) of patients than expected in this population had EPSs. Therefore, we concluded that an interventional study is not feasible. However, medications that cause EPSs are often used in palliative care; therefore, a longitudinal study is warranted.
Purpose: This systematic review aims to summarize factors that influence the quality of life (QOL) of advanced cancer patients in palliative care (PC) in developing countries. Understanding this context in developing countries milieu is necessary; however, this outcome is rarely reported.
Methods: Following the PRISMA guidelines, the electronic databases MEDLINE, Embase, CINAHL, and Web of Science were systematically searched using the search terms: QOL, cancer, PC, and names of all developing countries. Studies with less than ten subjects, qualitative or pilot studies, reviews, conference abstracts, and that reported validation of QOL questionnaires were excluded.
Results: fifty-five studies from 15 developing countries in the African (n = 5), Latin America and the Caribbean (n = 10), and Asian (n = 40) region were included in the narrative synthesis. 65.4% were cross-sectional, 27.3% were cohort studies, 7.3% were RCTs or quasi-experimental studies. Around 30 QOL factors were studied with 20 different types of QOL instruments. Advanced cancer patients who were older, married/ever married, participated in additional care within PC, used complementary and alternative medicine (CAM), and practiced spirituality/religiosity showed higher QOL score. Low educational level and high depression were associated with a lower QOL.
Conclusion: Various factors affect QOL among cancer patients in PC. Patients valued the use of CAMs; however, the quality and safety aspects should be properly addressed. Important factors that influenced the QOL score were social and spiritual support. While there is a general need to develop PC strategies further, recognizing patients’ needs should be prioritized in national cancer programs.
OBJECTIVE: To clarify the safety and effectiveness of antipsychotic medication for delirium in patients with advanced cancer receiving palliative care.
METHODS: This was a prospective observational study involving consecutive patients with advanced cancer and delirium receiving antipsychotics in inpatient hospices or psycho-oncology settings. Adjusted mean scores of the Delirium Rating Scale Revised-98 (DRS; range: 0-39) were calculated at baseline and Day 3 using generalized estimating equations. Adverse events over 7 days were evaluated.
RESULTS: Data from 756 patients were analyzed (Mage = 72 ± 11 years, 62% male, 48% bedridden). The adjusted mean DRS score significantly decreased after antipsychotics administration (21.5 [95% confidence interval 19.5 to 23.4] to 20.8 [18.9 to 22.8], p = 0.03, effect size [ES] = 0.02). Significant improvement was associated with age of 75 or older (ES = 0.07), better performance status (0.32), longer estimated prognosis (0.25), psycho-oncological consultation settings (0.20), hyperactive (0.14) or mix-motor subtypes (0.24) of delirium, and quetiapine administration (0.19); significant deterioration was observed in patients with "days" prognosis (0.18). Extrapyramidal symptoms (9.8%) and somnolence (8.5%) were the most prevalent adverse events.
CONCLUSIONS: The use of antipsychotics as part of comprehensive delirium management was safe and may provide some symptomatic benefits for patients with terminal illness and delirium. Along with adequate non-pharmacological interventions, judicious use of antipsychotics is still recommended.
While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers.
BACKGROUND: Antimicrobial use during end-of-life care of older adults with advanced cancer is prevalent. Factors influencing the decision to prescribe antimicrobials during end-of-life care are not well defined.
AIM: To evaluate factors influencing medicine subspecialists to prescribe intravenous and oral antimicrobials during end-of-life care of older adults with advanced cancer to guide an educational intervention.
DESIGN: 18-item single-center cross-sectional survey.
SETTING/PARTICIPANTS: Inpatient medicine subspecialists in 2018.
RESULTS: Of 186 subspecialists surveyed, 67 (36%) responded. Most considered withholding antimicrobials at the time of clinical deterioration during hospitalization (n = 54/67, 81%), viewed the initiation of additional intravenous antimicrobials as escalation of care (n = 44/67, 66%), and believed decision-making should involve patients or surrogates and providers (n = 64/67, 96%). Fifty-one percent (n = 30/59) of respondents who conducted advance care planning did not discuss antimicrobials. Barriers to discussing end-of-life antimicrobials included the potential to overwhelm patients or families, challenges of withdrawing antimicrobials, and insufficient training.
CONCLUSIONS: Although the initiation of additional intravenous antimicrobials was viewed as escalation of care, antimicrobials were not routinely discussed during advance care planning. Educational interventions that promote recognition of antimicrobial-associated adverse events, incorporate antimicrobial use into advance care plans, and offer communication simulation training around the role of antimicrobials during end-of-life care are warranted.
COVID-19 was first reported in Wuhan, China, in December 2019; it rapidly spread around the world and was declared a global pandemic by the World Health Organization in March 2020. The palliative care program at the Princess Margaret Cancer Centre, Toronto, Canada, provides comprehensive care to patients with advanced cancer and their families, through services including an acute palliative care unit, an inpatient consultation service, and an ambulatory palliative care clinic. In the face of a global pandemic, palliative care teams are uniquely placed to support patients with cancer who also have COVID-19. This may include managing severe symptoms such as dyspnea and agitation, as well as guiding advance care planning and goals of care conversations. In tandem, there is a need for palliative care teams to continue to provide care to patients with advanced cancer who are COVID-negative but who are at higher risk of infection and adverse outcomes related to COVID-19. This paper highlights the unique challenges faced by a palliative care team in terms of scaling up services in response to a global pandemic while simultaneously providing ongoing support to their patients with advanced cancer at a tertiary cancer center.
Life-sustaining treatments (LSTs) and end-of-life (EOL) care's goal for prolonging one's life are defined as aggressive EOL care among critically ill patients. They have limited effects and add unnecessary financial burden to advanced cancer patients. A questionnaire survey was conducted to collect information on demographics, disease conditions, preference for LSTs, and goal of EOL care among advanced cancer patients of comprehensive grade-A tertiary hospitals in Wuhan, mainland China. Most patients preferred to accept LSTs when they were in a critical condition, including cardiopulmonary resuscitation (89.9%), mechanical ventilation support (85.7%), nasogastric tube feeding (84.1%), blood transfusion (89.8%), general surgery (87.5%), and hemodialysis (85.8%). Most (88%) preferred prolonging life as the goal of EOL care. Logistic regression showed common influencing factors were participants who completed junior high/high school or below and were financially adequate had higher reference for aggressive EOL care. Patients whose physician had accurately disclosed prognosis; however, showed a decrease trend for aggressive EOL care. Most advanced cancer patients preferred to accept aggressive EOL care. Discussions about prognosis disclosure among physicians and patients should be improved. Education about LSTs' limitations and comfort-oriented care's benefits should be promoted among the advanced cancer patients in mainland China.