Context: Patients with advanced cancer face a life-limiting condition that brings a high symptom burden that often includes pain, fatigue, and psychological distress. Psychosocial interventions have promise for managing symptoms but need additional tailoring for these patients' specific needs. Patients with advanced cancer in the community also face persistent barriers—availability of interventions in community clinics as well as financial and illness-related factors—to accessing psychosocial interventions.
Objectives: The aim of the present study was to assess the feasibility and acceptability of telephone implementation of Engage, a novel brief combined Coping Skills Training and Acceptance and Commitment Therapy protocol, for reducing symptoms and increasing quality of life in community patients with advanced cancer.
Methods: Adult patients with advanced cancer receiving care in the community received Engage, four 60-minute manualized telephone sessions delivered by a trained psychotherapist and completed pretreatment and post-treatment assessments.
Results: Engage was feasible, achieving 100% accrual (N = 24) of a heterogeneous sample of patients with advanced cancer, with good retention (88% completed). Acceptability was demonstrated via satisfaction (mean 29 of 32; SD 2), engagement (95% attendance), and use of skills. Secondary analyses pointed to reductions in pain interference, fatigue, psychological distress, and improvements in psychological acceptance and engagement in value-guided activity after treatment.
Conclusion: Engage, our brief novel combined Coping Skills and Acceptance and Commitment Therapy intervention, demonstrated initial feasibility and acceptability when delivered over the telephone and increased access for community clinic patients with advanced cancer. Future research will assess the comparative efficacy of Engage in larger randomized trials.
All medical care providers are legally and ethically bound to respect their patients' wishes. However, as patients lose decision-making capacity and approach end of life, their families or surrogates, who are confronted with grief, fear, self-doubt, and/or uncertainty, may ask physicians to provide treatment that contradicts the patients' previously stated wishes. Our work discusses the legal and ethical issues surrounding such requests and provides guidance for clinicians to ethically and compassionately respond—without compromising their professional and moral obligations to their patients.
Context: Clinicians often worry that patients' recognition of the terminal nature of their illness may impair psychological well-being.
Objectives: To determine if such recognition was associated with decrements to psychological well-being that persisted over time.
Methods: About 87 patients with advanced cancer, with an oncologist-expected life expectancy of less than six months, were assessed before and after an oncology visit to discuss cancer restaging scan results and again at follow-up (median time between assessments, approximately six weeks). Prognostic understanding (PU) was assessed at previsit and postvisit, and a change score was computed. Psychological well-being was assessed at pre, post, and follow-up, and two change scores were computed (post minus pre; follow-up minus post).
Results: Changes toward more accurate PU was associated with a corresponding initial decline in psychological well-being (r = -0.33; P < 0.01) but thereafter was associated with subsequent improvements (r = 0.40; P < 0.001). This pattern remained controlling for potential confounds. Patients showed different patterns of psychological well-being change (F = 3.07, P = 0.05; F = 6.54, P < 0.01): among patients with improved PU accuracy, well-being initially decreased but subsequently recovered; by contrast, among patients with stable PU accuracy, well-being remained relatively unchanged, and among patients with decrements in PU accuracy, well-being initially improved but subsequently declined.
Conclusion: Improved PU may be associated with initial decrements in psychological well-being, followed by patients rebounding to baseline levels. Concerns about lasting psychological harm may not need to be a deterrent to having prognostic discussions with patients.
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Objectives: To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.
Methods: We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.
Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.
Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.
"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
Elles affectent 5 % des patients atteints de cancer et 10 % de ceux à un stade métastatique. Leur pronostic vital est péjoratif, souvent inférieur à 6 mois.Les plaies cancéreuses peuvent résulter d’un processus destructif ou prolifératif. Elles ne cicatrisent pas spontanément et reflètent l’état d’avancée du cancer.
BACKGROUND: Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults.
OBJECTIVE: Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes.
METHOD: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed.
RESULTS: PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11).
SIGNIFICANCE OF RESULTS: Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.
PURPOSE: Although nutritional interventions are becoming widely used in cancer patients, purposes and results of such treatment are not always well-defined. This is because nutrition is traditionally considered a palliative treatment to be confined to the area of palliative cares, whereas the modern approach includes nutrition as an early supplemental support to improve compliance of patients with the oncologic therapies and total parenteral nutrition may be recommended in patients who would be destined to succumb prior from starvation-malnutrition than from tumour progression. Purpose of this paper if to define the potential as well as the limitations of nutritional interventions on both the survival and the quality of life of the advanced cancer patients.
RECENT FINDINGS: Some RCT on the use of oral, enteral and supplemental parenteral nutrition in patients on oncologic therapy show some benefit on compliance with therapy and in some domains of quality of life. Some malnourished (hypo)aphagic incurable cancer patients may survive longer thanks to parenteral nutrition, while few data suggest that quality of life may be maintained for a limited period of time. With a few exceptions, oncology and nutrition have till recently travelled on parallel tracks without talking each other. The oncologist who knows the natural history of the patients should understand which risk of complication and of poor tolerance to the treatment can malnourished patients carry and which is the potential of parenteral nutrition in hypophagic incurable patients.
Purpose: Our study aimed to evaluate the association between CDS and survival time using the likelihood of receiving CDS to select a matched non-CDS group through an accurate measurement of survival time based on initiation of CDS.
Methods: A retrospective cohort study was performed using an electronic database to collect data regarding terminally ill cancer patients admitted to a specialized palliative care unit from January 2012 to December 2016. We first used a Cox proportional hazard model with receiving CDS as the outcome to identify individuals with the highest plausibility of receiving CDS among the non-CDS group (n = 663). We then performed a multiple regression analysis comparing the CDS group (n = 311) and weighted non-CDS group (n = 311), using initiation of CDS (actual for the CDS group; estimated for the non-CDS group) as the starting time-point for measuring survival time.
Results: Approximately 32% of participants received CDS. The most common indications were delirium or agitation (58.2%), intractable pain (28.9%), and dyspnea (10.6%). Final multiple regression analysis revealed that survival time was longer in the CDS group than in the non-CDS group (Exp(ß), 1.41; P < 0.001). Longer survival with CDS was more prominent in females, patients with renal dysfunction, and individuals with low C-reactive protein (CRP) or ferritin, compared with their counterpart subgroup.
Conclusions: CDS was not associated with shortened survival; instead, it was associated with longer survival in our terminally ill cancer patients. Further studies in other populations are required to confirm or refute these findings.
Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child's previous cancer experience. It is highly impacted by the quality of physicians' communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians' training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial.
In the health care setting, and especially in cancer patients nearing the end of life, administrators, medical staff, patients, and families face challenges of a social, legal, religious, and cultural nature in the process of care. The present study aimed to perform a metasynthesis of qualitative studies conducted on providing end-of-life care for cancer patients. The present metasynthesis was conducted using Sandelowski and Barroso's method. A literature search was performed in PubMed, Scopus, Web of Science, and Embase databases, from the inception to date, and a total of 21 articles were identified as eligible for inclusion in the study. Critical Appraisal Skills Programme (CASP) criteria were used for assessing the articles, and data were analyzed by the subject review. Six themes were extracted for end-of-life care including psychological support, palliative support, educational-counseling support, spiritual support, preferential support, and supportive interactions, each comprising a number of categories. The most frequently mentioned categories were high-value care (67%) and adaptive acceptance (57%). The findings of this metasynthesis support the view that nurses are moral agents who are deeply invested in the moral integrity of end-of-life care involving assisted death. The present study showed that providing high-value care and facilitating adaptive acceptance are important constituents of a holistic strategy for providing end-of-life care to cancer patients.
BACKGROUND: Early integration of palliative care concurrently to standard cancer care is associated with several benefits for patients and their caregivers. However, communication barriers on part of the caring physicians often impede a timely referral to palliative care. This study describes the protocol of the evaluation of a communication skills training aiming to strengthen the ability of physicians to address palliative care related topics adequately and early during disease trajectory.
METHODS: We will implement a communication skills training and evaluate it within a prospective, multi-centered, two-armed randomized controlled trial (RCT), which will be conducted at four sites in Germany. Eligible subjects are all physicians treating patients with advanced cancer in their daily routine. An intervention group (IG) receiving a group training will be compared to a wait-list control group (CG) receiving the training after completion of data collection. At pre- and post-measurement points, participants will conduct videotaped conversations with standardized simulated patients (SP). Primary outcome will be the external rating of communication skills and consulting competencies addressing palliative care related topics. Secondary outcomes on core concepts of palliative care, basic knowledge, attitudes, confidence and self-efficacy will be assessed by standardized questionnaires and self-developed items. A further external assessment of the quality of physician-patient-interaction will be conducted by the SP. Longitudinal quantitative data will be analyzed using covariate-adjusted linear mixed-models.
DISCUSSION: If the communication skills training proves to be effective, it will provide a feasible intervention to promote an earlier communication of palliative care related topics in the care of advanced cancer patients. This would help to further establish early integration of palliative care as it is recommended by national and international guidelines.
Unclear communication of inauspicious prognoses may disorientate both patients and their relatives, drastically jeopardizing the planning of palliative care. This paper considers the issue of truth-telling in the communicative problems of nurses and students of nursing with terminally ill patients. The fundamental objective is the analysis of the difficulties related to the lack of truth-telling and how it might impact their professional and personal lives. A qualitative study was realized, involving 47 participants, both nurses (25) and nursing students (22), working in palliative care units or in associations of volunteers for the assistance of oncological patients. The exploration was focused on the way they relate to patients who are not aware of their real health conditions and their consequences. Particular attention was paid to their opinions concerning what could be done in order to manage such problematic situations in the near future.
Hispanic Americans are among the fastest growing minority groups in the USA, and understanding their preferences for medical decision-making and information sharing is imperative to provide high quality end of life care. Studies exploring these decision control preferences (DCPs) are limited and found inconsistent results. (1) To measure DCPs of Hispanic patients in the Bronx. (2) To measure disclosure of information preferences of Hispanic patients in the Bronx. This is a cross-sectional survey. One hundred nineteen cancer patients who self-identified as Hispanic and were waiting at the oncology clinic at Montefiore Medical Center Cancer Center. Proportions of patients endorsing DCPs and disclosure of information preferences are reported. The relationship between patient characteristics and DCPs was tested using chi-squared tests of homogeneity. The majority (63, 52.9%) preferred shared decision-making with their doctors, families or both, while 46 (38.7%) had an active decision-making style. A minority (9, 7.6%) had a passive decision-making style, deferring to their families, and only 1 (0.8%) deferring to the physician. No demographic characteristics significantly predicted DCPs. The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis (94%), treatment options (94%), treatment expectations (92%), and treatment risks and benefits (96%). These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis, and plan.
Background: A broad consensus on the optimal structure, intensity, and timing of early specialist palliative care (SPC) intervention is lacking.
Objective: To evaluate the benefit of an early and systematic palliative intervention alongside standard oncology care compared with standard oncology care alone in patients with advanced solid tumors.
Design: PALINT, a single-center RCT, conducted at the Masaryk Memorial Cancer Institute, the largest comprehensive cancer center in the Czech Republic (CR).
Setting/Subjects/Measurements: Patients with newly diagnosed advanced cancer within six weeks from the start of the palliative systemic therapy were randomly assigned to the integration of SPC (intervention; a consultation with a PC physician every six to eight weeks) or to the standard oncology care (control). The primary endpoint was the quality of life (QOL) assessed by EORTC QLQ C30 and Hospital Anxiety and Depression Scale (HADS) at three and six months.
Results: From 2015 to 2017, a total of 126 patients were randomly assigned to intervention (60) or to control (66) arm. At baseline, at three and six months, the global QOL scores (mean, 95% CI) in the intervention and control arm were 58.6 (53.9–63.3), 61.9 (56.4–67.4) and 66.7 (60.2–73.2) versus 54.2 (49.4–58.9), 59.0 (53.7–64.3), and 62.8 (56.7–68.9), respectively. The prevalence of anxiety (HADS-A; value >7) was 36.7%, 27.5%, and 18.9% versus 34.8%, 23.5%, and 16.3% and the prevalence of depression (HADS-D; value >7) was 28.3%, 25.4%, and 29.7% versus 28.8%, 29.4%, and 27.9%, respectively. There was no significant difference between the two arms. The overall survival was similar in both arms (347 vs. 310 days; p = 0.203).
Conclusions: A model of early integration of SPC consisting of a consultation with a PC physician alone every six to eight weeks did not increase the QOL of patients with advanced cancer compared with routine oncology care in a center with widely available supportive services. These negative results underline the importance of the multidisciplinary patient centered approach in the early SPC.
Continuous deep sedation (CDS) is used to alleviate unbearable and otherwise refractory symptoms in patients dying of cancer. No data are available concerning CDS in children from Japan to date. This study primarily aimed to describe experience in CDS in child cancer patients at Kyoto University Hospital. The secondary aims were to identify the characteristics of patients who received CDS, and to assess ability in daily living at the end of life. A retrospective chart review was performed for child cancer patients who died at the institute between 2008 and 2017. The data of 35 patients were analyzed. Nine (26%) patients had received CDS. Indications for CDS were dyspnea (56%), agitation (22%), seizures (22%), and pain (11%). Midazolam was used in all nine cases. In eight (89%) patients, opioids were also prescribed. In seven (78%) patients, CDS was performed for < 48 hours. In all nine cases, consent was obtained from the parent(s) but not from the children. CDS was more likely in patients with solid tumors (p = 0.018) and those who had received no respite sedation (p = 0.002). Patients without central nervous system symptoms tended to maintain their capacity for oral intake and verbal communication until a few days prior to death. This is the first report on CDS in child cancer patients from Japan. In the CDS literature, cross-study differences are evident for incidence, target symptoms, duration, and the decision-making process. Further international discussion is warranted concerning indications for CDS and the decision-making process.
Background: Oncologists often struggle with managing the unique care needs of older adults with cancer. This study sought to determine the feasibility of delivering a transdisciplinary intervention targeting the geriatric-specific (physical function and comorbidity) and palliative care (symptoms and prognostic understanding) needs of older adults with advanced cancer.
Methods: Patients aged =65 years with incurable gastrointestinal or lung cancer were randomly assigned to a transdisciplinary intervention or usual care. Those in the intervention arm received 2 visits with a geriatrician, who addressed patients’ palliative care needs and conducted a geriatric assessment. We predefined the intervention as feasible if >70% of eligible patients enrolled in the study and >75% of eligible patients completed study visits and surveys. At baseline and week 12, we assessed patients’ quality of life (QoL), symptoms, and communication confidence. We calculated mean change scores in outcomes and estimated intervention effect sizes (ES; Cohen’s d) for changes from baseline to week 12, with 0.2 indicating a small effect, 0.5 a medium effect, and 0.8 a large effect. Results: From February 2017 through June 2018, we randomized 62 patients (55.9% enrollment rate [most common reason for refusal was feeling too ill]; median age, 72.3 years; cancer types: 56.5% gastrointestinal, 43.5% lung). Among intervention patients, 82.1% attended the first visit and 79.6% attended both. Overall, 89.7% completed all study surveys. Compared with usual care, intervention patients had less QoL decrement (–0.77 vs –3.84; ES = 0.21), reduced number of moderate/severe symptoms (–0.69 vs +1.04; ES = 0.58), and improved communication confidence (+1.06 vs –0.80; ES = 0.38).
Conclusions: In this pilot trial, enrollment exceeded 55%, and >75% of enrollees completed all study visits and surveys. The transdisciplinary intervention targeting older patients’ unique care needs showed encouraging ES estimates for enhancing patients’ QoL, symptom burden, and communication confidence.
PURPOSE: Patients with advanced cancer often have a poor understanding of cancer incurability, which correlates with more aggressive treatment near the end of life (EOL). We sought to determine whether training oncologists to elicit patient values for goals-of-care (GoC) discussions will increase and improve these discussions. We explored its impact on use of aggressive care at EOL.
METHODS: We enrolled and used block randomization to assign 92% of solid tumor oncologists to 2-hour communication skills training and four coaching sessions. We surveyed 265 patient with newly diagnosed advanced cancer with < 2-year life expectancy at baseline and 6 months. We assessed prevalence and quality of GoC communication, change in communication skills, and use of aggressive care in the last month of life.
RESULTS: Intervention (INT) oncologists' (n = 11) skill to elicit patient values increased (27%-55%), while usual care (UC) oncologists' (n = 11) skill did not (9%-0%; P = .01). Forty-eight percent (n = 74) INT v 51% (n = 56) UC patients reported a GoC discussion (P = .61). There was no difference in the prevalence or quality of GoC communication between groups (global odds ratio, 0.84; 95% CI, 0.57 to 1.23). Within 6 months, there was no difference in deaths (18 INT v 16 UC; P = .51), mean hospitalizations (0.47 INT v 0.42 UC; P = .63), intensive care unit admissions (5% INT v 9% UC; P = .65), or chemotherapy (26% INT v 16% UC; P = .39).
CONCLUSION: Use of a coaching model focused on teaching oncologists to elicit patient values improved that skill but did not increase prevalence or quality of GoC discussions among patients with advanced cancer. There was no impact on high care utilization at EOL.
BACKGROUND: There is increasing recognition of the importance of early incorporation of palliative care services in the care of patients with advanced cancers. Hospice-based palliative care remains underutilized for black patients with cancer, and there is limited literature on racial disparities in use of non-hospice-based palliative care services for patients with cancer.
OBJECTIVE: The primary objective of this study is to describe racial differences in the use of inpatient palliative care consultations (IPCC) for patients with advanced cancer who are admitted to a hospital in the United States.
DESIGN: This retrospective cohort study analyzed 204 175 hospital admissions of patients with advanced cancers between 2012 and 2014. The cohort was identified through the National Inpatient Dataset. International Classification of Disease, Ninth Revision codes were used to identify receipt of a palliative care consultation.
RESULTS: Of this, 57.7% of those who died received IPCC compared to 10.5% who were discharged alive. In multivariable logistic regression models, black patients discharged from the hospital, were significantly less likely to receive a palliative care consult compared to white patients (odds ratio [OR] black: 0.69, 95% CI: 0.62-0.76).
CONCLUSIONS: Death during hospitalization was a significant modifier of the relationship between race and receipt of palliative care consultation. There are significant racial disparities in the utilization of IPCC for patients with advanced cancer.
BACKGROUND: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking.
METHODS: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017.
RESULTS: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful.
CONCLUSIONS: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.