Cela fait trois ans que Matthieu n'a pas vu sa famille, depuis qu'il a claqué la porte de la maison, le jour de ses 18 ans. Il n'a pas répondu aux appels de sa mère, a évité de donner des nouvelles. Il vit de petits boulots avec sa compagne Emma.
Sa tante, Grazia, lui apprend que sa mère est morte d'un cancer foudroyant. Il décide alors de rentrer pour l'enterrement. Mais cela se complique lorsqu'il découvre que sa mère, Bianca Fois, a tout prévu pour son inhumation en Sardaigne, dans le caveau familial : c'est lui, Matthieu, qui doit aller là-bas, avec son frère et sa soeur, des jumeaux de 11 ans, Gavi et Lena, avec lesquels il a été élevé mais qu'il ne connaît plus et dont il a des choses à se faire pardonner.
Ce livre raconte le deuil de trois adolescents qui devront apprendre à mieux se connaître pour traverser cette épreuve et celles du passé.
Advanced cancer patients are at an increased risk of developing depressive symptoms, which can lead to major depressive disorder and a poor quality of life. It is important that symptoms of depression to be addressed early and frequently throughout the trajectory of the disease process. Depression is underdiagnosed and therefore undertreated in advanced cancer patients. Clinicians often fail to perform regular depression screenings as recommended by the National Comprehensive Cancer Network. Depressive symptoms are overlooked as they tend to overlap with the effects of disease progression and cancer treatments. Patients' complaints of anorexia, chronic pain, and sleep disturbances do not necessarily trigger practitioners to perform depression screenings. African Americans with advanced cancer are at a higher risk of developing depression, but may not identify as depressed due to the stigma of mental health in the black community. Screening tools such as the 2- and 9-item Patient Health Questionnaire, Beck Depression Inventory II, Hospital Anxiety and Depression Scale, and the Distress Thermometer and Problem List are common brief instruments that can screen for depression. Providing early symptom relief of depressive symptoms through psychotherapy and pharmacologic interventions will benefit the patient, family, and caregivers while improving the quality of life throughout the trajectory of the illness.
Un homme atteint d'un cancer fuit son monde familier et arrive par hasard à Clermont-Ferrand. Il décide d'y rester en attendant la mort, évoquant sa vie passé à travers la prostitution, les bistrots sordides, la religion, des figures célèbres de l'histoire, du sport et de la science ou encore le destin.
Cet ouvrage est le journal de bord d'une mère de 32 ans atteinte d'un cancer. Les entrées, qui s'étalent d'octobre 2017 à septembre 2018, relatent les bons et les mauvais jours ainsi que les réflexions de l'auteure sur l'impact familial, financier et social de la maladie.
BACKGROUND: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care.
OBJECTIVE: Conduct a MT intervention to determine intervention acceptability and initial effects on ratings of pain, worry reduction, and quality of life.
DESIGN: Pre-post single group pilot study.
SETTING/SUBJECTS: Eight children with cancer (age 10-17) and one of their parents were recruited from a palliative care service.
PROCEDURE/MEASUREMENTS: Baseline (one week prior to intervention): demographics, MT expectations, QOL, and pain measures. Intervention (one month): MT was provided once per week, with children's pain and worry ratings occurring immediately before and after each MT session. Follow Up (4-6 weeks after baseline): QOL, pain, and MT/study acceptability questionnaires.
RESULTS: Participants reported significant decreases in pain following two MT sessions, and worry following one session. No significant changes in pain symptoms and QOL were found between baseline and follow up. Participants positively endorsed the study and the MT intervention, and there were no adverse effects reported.
CONCLUSIONS: MT may lead to immediate decreases in pain and worry in children with cancer who are receiving palliative care, however the effects may not be sustained long term. Difficulties regarding protocol feasibility including recruitment and study compliance remain important considerations for future work.
CONTEXT: Many cancer patients are referred to palliative care (PC) outpatient clinics but do not attend consultations, which increases the difficultly of integrating PC in a timely manner.
OBJECTIVES: To evaluate the frequency, causes and profile of missing first-time consultations in a PC outpatient clinic.
METHODS: Data from advanced cancer patients who were scheduled for first-time visits to the PC Outpatient Clinic from September 2018 to August 2019 were analyzed. Missed consultation (MC) was defined as a non-performed consultation with no prior notice of cancellation and missed opportunity of palliative care (MOPC) was defined as a non-performed consultation regardless of being notified in advance. The causes of the absence were identified by telephone using a standardized form. Logistic regression models were used to identify the profile of patients who MOPC.
RESULTS: 1,468 patients were scheduled for first-time visits to the PC Outpatient Clinic; MC = 21.7% (n=275) and MOPC = 32.5% (n=478). Of the total number of patients who MOPC, 86 (18%) were later seen in a median time (p25-p75) of 29.5 days (7.0 -66.5). The most common cause of MOPC was death before consultation (n=92, 29.8%). Referral to PC using a standardized protocol (OR: 0.787, p=0.044) and residence in distant cities (OR: 2.394, p<0.001) were independently associated with MOPC.
CONCLUSIONS: Approximately one third of patients eligible for PC miss the opportunity to be included earlier; only 18% of them are consulted later. Use of standardized referral protocols may help to reduce these absence rates.
Objective: We still don't know if recurrent major depressive disorder (RMDD) may impact the quality of the end-of-life (EOL) cancer care in France. To tackle this knowledge gap, we explored EOL care in RMDD subjects who died from cancer compared to subjects without psychiatric disorder in a 4-year nationwide cohort study.
Design: Nationwide cohort study.
Setting: National hospital database, France.
Participants: All patients aged =15 years who died from cancer in hospital: 4070 RMDD subjects and 222,477 controls, 2013-2016, France.
Main outcome measures: Palliative care in the last 31 days of life and high-intensity EOL care including chemotherapy in the last 14 days of life, artificial nutrition, tracheal intubation, mechanical ventilation, gastrostomy, cardiopulmonary resuscitation, dialysis, transfusion, surgery, endoscopy, imaging, intensive care unit and emergency department admission in the last 31 days of life. Multivariate generalized mixed models with log-normal distribution was used to compare RMDD subjects and controls.
Results: Compared to the controls, the RMDD subjects died 3 years younger, had more comorbidities, more thoracic cancers, less metastases and longer time from cancer diagnosis to death. After matching and adjustment, subjects with RMDD were found to receive more palliative care and less high-intensity EOL care, had fewer iterative admissions to acute care unit, and died less often in the intensive care unit and emergency department.
Conclusions: RMDD subjects were more likely to receive palliative care associated with less high-intensity EOL care. Yet the interpretation may be discussed, resulting from either patients’/families’ wishes or difficulties for providers in offering personalized care to RMDD.
Background: Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services.
Methods: A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes.
Results: Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal.
Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers’ attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer.
Conclusion: There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources.
OBJECTIVE: To compare Individual Meaning-Centered Psychotherapy-Palliative Care (IMCP-PC) to counselling-based psychotherapy in patients receiving home palliative care (PC).
METHODS: Fifty-one patients with advanced-stage cancer receiving home PC were recruited for this. Two-arm (individual meaning-centered psychotherapy-palliative-IMCP-PC-care vs. counselling) randomized feasibility trial. Anxiety, depression, demoralization, and emotional distress were evaluated before and after three psychotherapy sessions. Patient perceptions of the treatment were assessed after completion of therapy.
RESULTS: Thirty-two patients (16 in each group) completed all three sessions as well as the pre- and post-therapy questionnaires and were therefore included in the final analysis. All patients in the IMCP-PC group showed a significant decrease in levels of demoralization (despair), anxiety, depression, and emotional distress. By contrast, the only variable that significantly improved in the counselling group was demoralization. The post-treatment questionnaire revealed no significant between-group differences regarding patient perception of the structure, focus, or length of treatment. However, the IMCP-PC group rated the treatment more highly with regard to its value in helping them to find meaning in life.
CONCLUSIONS: IMCP-PC is a specific psychotherapy tailored to the needs of patients with advanced cancer. The results of the present study indicate that this treatment is suitable for patients at end of life that are not able to attend outpatient sessions. Although more research is needed, the findings of this feasibility trial suggest that the IMCP-PC merits consideration for patients receiving home palliative care (PC).
BACKGROUND: Pain of a moderate or severe intensity affects over half of patients with advanced cancer and remains undertreated in at least one-third of these patients.
AIM: The aim of this study was to provide a pragmatic overview of the evidence supporting the use of interventions in pain management in advanced cancer and to identify where encouraging preliminary results are demonstrated but further research is required.
DESIGN: A scoping review approach was used to examine the evidence supporting the use of guideline-recommended interventions in pain management practice.
DATA SOURCES: National or international guidelines were selected if they described pain management in adult cancer patients and were written within the last 5 years in English. The Cochrane Database of Systematic Reviews (January 2014 to January 2019) was searched for 'cancer' AND 'pain' in the title, abstract or keywords. A MEDLINE search was also made.
RESULTS: A strong opioid remains the drug of choice for treating moderate or severe pain. Bisphosphonates and radiotherapy are also effective for cancer-related bone pain. Optimal management requires a tailored approach, support for self-management and review of treatment outcomes. There is likely a role for non-pharmacological approaches. Paracetamol should not be used in patients taking a strong opioid to treat pain. Cannabis-based medicines are not recommended. Weak opioids, ketamine and lidocaine are indicated in specific situations only.
CONCLUSION: Interventions commonly recommended by guidelines are not always supported by a robust evidence base. Research is required to evaluate the efficacy of non-steroidal anti-inflammatory drugs, anti-convulsants, anti-depressants, corticosteroids, some invasive anaesthetic techniques, complementary therapies and transcutaneous electrical nerve stimulation.
Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.
Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.
Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.
Implications for Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.
PURPOSE OF REVIEW: This review was undertaken to survey recent literature for research reports and comprehensive clinical reviews addressing the pharmacologic management of nausea and vomiting (N&V) in advanced cancer. The goal was to integrate findings in a comprehensive article that incorporates palliative care concepts into antiemetic treatment.
RECENT FINDINGS: There are few published studies of N&V in advanced cancer; such research may be limited by the multicausal nature of N&V and participant burden to patients with life-limiting disease. Most articles are written by oncologists who also specialize in palliative care, and those addressing adverse effects of drugs used as antiemetics are found in other literature. Articles addressing more novel therapies, like cannabinoids and medical marijuana, are uncommon in the oncology literature. N&V in patients with progressive or advanced cancer is often multicausal. Nausea is more common and persistent, and even mild nausea is bothersome and may cause anxiety or depression. The mechanisms of nausea and vomiting overlap, but different neural pathways constitute the final pathway for each-the brainstem for vomiting and higher brain regions for nausea. Common causes of N&V in advanced cancer include constipation, opioids, and malignant bowel obstruction. About 40% have undetermined causes and may be exacerbated by impaired gastric emptying, chemical imbalances, or other factors. Several drugs that have antiemetic effects and act at different receptors are used to palliate N&V. There is a paucity of research that supports palliative antiemetic choices, and other research is needed to define potential therapeutic strategies that capitalize on differences between nausea and vomiting.
Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.
Palliative care is seeing cancer patients earlier in the disease trajectory with a multitude of chronic issues. Chronic non-malignant pain (CNMP) in cancer patients is under-studied. In this prospective study, we examined the prevalence and management of CNMP in cancer patients seen at our supportive care clinic for consultation. We systematically characterized each pain type with the Brief Pain Inventory (BPI) and documented current treatments. The attending physician made the pain diagnoses according to the International Association for the Study of Pain (IASP) task force classification. Among 200 patients (mean age 60 years, 69% metastatic disease, 1-year survival of 77%), the median number of pain diagnosis was 2 (IQR 1-2); 67 (34%, 95% CI 28-41%) had a diagnosis of CNMP; 133 (67%) had cancer-related pain; and 52 (26%) had treatment-related pain. In total, 12/31 (39%) patients with only CNMP and 21/36 (58%) patients with CNMP and other pain diagnoses were on opioids. There was a total of 94 CNMP diagnoses among 67 patients, including 37 (39%) osteoarthritis and 20 (21%) lower back pain; 30 (32%) were treated with opioids. In summary, CNMP was common in the timely palliative care setting and many patients were on opioids. Our findings highlight the need to develop clinical guidelines for CNMP in cancer patients to standardize its management.
OPINION STATEMENT: Patients with advanced cancer and their families commonly seek information about prognosis to aid decision-making in medical (e.g. surrounding treatment), psychological (e.g. saying goodbye), and social (e.g. getting affairs in order) domains. Oncologists therefore have a responsibility to identify and address these requests by formulating and sensitively communicating information about prognosis. Current evidence suggests that clinician predictions are correlated with actual survival but tend to be overestimations. In an attempt to cultivate prognostic skills, it is recommended that clinicians practice formulating and recording subjective estimates of prognosis in advanced cancer patient's medical notes. When possible, a multi-professional prognostic estimate should be sought as these may be more accurate than individual predictions alone. Clinicians may consider auditing the accuracy of their predictions periodically and using feedback from this process to improve their prognostic skills.Clinicians may also consider using validated prognostic tools to complement their clinical judgements. However, there is currently only limited evidence about the comparative accuracy of different prognostic tools or the extent to which these measures are superior to clinical judgement. Oncologists and palliative care physicians should ensure that they receive adequate training in advanced communication skills, which builds upon their pre-existing skills, to sensitively deliver information on prognosis. In particular, clinicians should acknowledge their own prognostic uncertainty and should emphasise the supportive care that can continue to be provided after stopping cancer-directed therapies.
BACKGROUND: Advance care planning (ACP) is an ongoing process of communication involving patients, family members, and caregivers on one side and healthcare providers on the other to establish values, goals, and preferences for future care, along with discussions concerning end-of-life care options. Advance directives promote patient autonomy and provide written documentation of a patient's wishes for future care.
OBJECTIVES: This quality improvement project aimed to determine if ACP discussions initiated by an advanced practice provider (APP) would enhance patient-centered end-of-life care.
METHODS: This study involved retrospective data collection of 20 inpatients and 20 outpatients without a scanned advance directive in the electronic health record at the time of admission or clinic visit, as well as an ACP intervention by an APP.
FINDINGS: APPs can initiate ACP discussions with patients with cancer, which may assist in their understanding of ACP, resulting in completion of the advance directive documents and a change in their code (resuscitation) status.
BACKGROUND: Caregivers of patients with cancer experience high levels of caregiver-related strain and burden (CGSB). Cancer caregiving is complex and can change dramatically depending on the cancer trajectory. Often, this experience leads to poor health outcomes for the caregiver.
OBJECTIVES: This review appraises the evidence on CGSB published from 2007 to October 2017.
METHODS: 128 interventional studies found in PubMed® and CINAHL® were appraised and categorized based on the Oncology Nursing Society's Putting Evidence Into Practice schema.
FINDINGS: Psychoeducation, supportive care/support interventions, and cognitive behavioral interventions are recommended to decrease CGSB. Caregiver skill training, couples therapy, decision support, mindfulness-based stress reduction, multicomponent interventions, and palliative care are likely to be effective. The evidence is not established for 13 interventions. Despite the proliferation of studies focusing on CGSB, studies with stronger designs and larger samples are needed.
Futility in medicine has been defined as excessive medical intervention with very little prospect of altering the clinical outcome in a positive manner. If treatments fail to release our patients from the preoccupation with the illness and do not allow them to pursue their life goals, then perhaps that treatment is futile.
Purpose: Patients with advanced cancer often receive suboptimal end-of-life (EOL) care. Particularly males with advanced cancer are more likely to receive EOL care that is more aggressive, even if death is imminent. Critical factors determining EOL care are EOL conversations or advance care planning. However, information about gender-related factors influencing EOL conversations is lacking. Therefore, the current study investigates gender differences concerning the content, the desired time point, and the mode of initiation of EOL conversations in cancer patients.
Methods: In a cross-sectional study, 186 female and male cancer patients were asked about their preferences for EOL discussions using a semi-structured interview, focusing on (a) the importance of six different topics (medical and nursing care, organizational, emotional, social, and spiritual/religious aspects), (b) the desired time point, and (c) the mode of discussion initiation.
Results: The importance of EOL topics differs significantly regarding issue (p = 0.002, 2 = 0.02) and gender (p < 0.001, 2 = 0.11). Males wish to avoid the engagement in discussions about death and dying particularly if they are anxious about their end-of-life period. They wish to be addressed regarding the “hard facts” nursing and medical care only. In contrast, females prefer to speak more about “soft facts” and to be addressed about each EOL topic. Independent of gender, the majority of patients prefer to talk rather late: when the disease is getting worse (58%), at the end of their therapy, or when loosing self-sufficiency (27.5%).
Conclusion: The tendency of patients to talk late about EOL issues increases the risk of delayed or missed EOL conversations, which may be due to a knowledge gap regarding the possibility of disease-associated incapability. Furthermore, there are significant gender differences influencing the access to EOL conversations. Therefore, for daily clinical routine, we suggest an early two-step, gender-sensitive approach to end-of-life conversations.