Atteint d’un cancer qui ne guérira pas, Ethan doit s’organiser. Il ne lui reste que peu de temps. Que doit-il mettre en ordre rapidement ? Et surtout, qu’a-t-il envie de faire ? Comment va-t-il occuper le peu de temps qu’il lui reste ? Après avoir établi une liste de dix rêves, Matthieu, son meilleur ami, va tout faire pour l’aider à les réaliser. À travers deux continents et quatre pays différents et au fil des différentes rencontres qui croiseront son chemin, Ethan va apprendre à accepter la maladie. Prêt à tout pour que sa fin de vie ne soit pas vaine, il dépassera ses propres limites... Avant que le cancer ne gagne.
[extrait résumé éditeur]
En 2016, Guylaine Champagne apprend qu'elle est atteinte d'un cancer du poumon de stade IV. Malgré une rémission, la maladie revient et le diagnostic de fin de vie est annoncé. Avec ce témoignage livré dans ses journaux intimes, l'auteure se dévoile dans toute sa vulnérabilité et son authenticité. Elle invite à la réflexion sur le sens profond de la vie au-delà de la maladie.
To investigate the effect of multidisciplinary interventions on pain management in cancer inpatients.
Four hundred thirty eight patients with cancer pain, who performed the multidisciplinary intervention were recruited. Before and after intervention, the Brief Pain Inventory (BPI) and the MD Anderson Symptom Inventory (MDASI) score as the primary endpoints and QOL scores as the secondary endpoint were all evaluated. To investigate the factors that led to different responses to multidisciplinary interventions, patients were classified as non-responders or responders.
Finally, 92 patients (63 male and 29 female) scheduled for cancer pain management by inter-professional team were studied. After individualized multidisciplinary therapy, both pain and symptom severity was improved, as demonstrated by lowered BPI worst and average pain scores, as well as symptom severity score measured by MDASI (P = .017, P = .003, and P = .011, respectively). The proportion of patients with mild pain increased regarding the BPI worst and average pain at baseline and after treatment (P < .05). The QOL analyses showed multidisciplinary interventions could significantly improve the function and symptom scores (P < .001). More patients in responder group received chemotherapy (58, 70.7%, P = .003), while fewer received mini-invasive therapy (6, 7.32%, P = .011).
Multidisciplinary interventions had certain beneficial effect on cancer pain management, especially in patients with moderate or severe pain.
Purpose: To evaluate factors associated with continuation of systemic anti-cancer therapy (SACT) after palliative care consultation, and SACT administration in the last 30 days of life, in outpatients with cancer referred to palliative care. Timing of referral was of particular interest.
Methods: Patient, disease, and treatment-related factors associated with SACT before and after palliative care, and in the last 30 days of life, were identified using 3-level multinomial logistic regression. Referral to palliative care was categorized by time from death as early (>12 months), intermediate (6-12 months), and late (=6 months).
Results: Of the 337 patients, 240 (71.2%) received SACT for advanced cancer; of these, 126 (52.5%) received SACT only prior to palliative care while 114 (47.5%) also received SACT afterward. Only 35/337 (10.4%) received SACT in the last 30 days of life. On multivariable analysis, factors associated with continuing SACT after palliative care consultation were a cancer diagnosis for <1 year (OR 3.09, p = 0.01), breast primary (OR 11.88, p = 0.0008), and early (OR 28.8, p < 0.001) or intermediate (OR 6.67, p < 0.001) referral timing. No factors were significantly associated with receiving SACT in the last 30 days versus earlier, but the median time from palliative care referral to death in those receiving SACT in the last 30 days versus stopping SACT earlier was 1.78 versus 4.27 months.
Conclusion: Patients who received SACT following palliative care consultation were more likely to be referred early; however, patients receiving SACT in their last 30 days tended to be referred late.
To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.
BACKGROUND: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share.
AIM: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives.
DESIGN: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions.
SETTING/PARTICIPANTS: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age.
RESULTS: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions.
CONCLUSIONS: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents.
METHODS: As part of a larger study examining shared decision-making near the end-of-life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis.
RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning.
CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at end-of-life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.
Objective: The objective of this study was to assess the psychosocial distress and associated factors in advanced cancer patients consulting at the outpatient Palliative Care Unit at the National Cancer Institute in Mexico City.
Design: A retrospective study was conducted using electronic records (June 2015 to December 2016).
Sample: A total of 646 patients with advanced cancer during their first visit to the outpatient palliative care unit at the National Cancer Institute in Mexico were evaluated using the Distress Thermometer (DT) and ECOG performance status scores.
Findings: Overall, 62% were women, with a median age of 57 years, and married (54.8%). The most frequent diagnosis was gastrointestinal cancer (28.6%), and 38.9% had a functional performance status of ECOG 2. The median DT score was 4.0 (IQR = 2–6), with 56% reporting DT scores =4. The three most frequent problems =4 were sadness (82.6%), feeling weak (81.2%), worry (79.6%), and <4 were feeling weak (57.7%), fatigue (55.6%), and financial security (52.1%). The variables associated with distress according to the multiple logistic regression analysis were problems with housing (OR = 2.661, 95% CI = 1.538–4.602), sadness (OR = 2.533, 95% CI = 1.615–3.973), transportation (OR = 1.732, 95% CI = 1.157–2.591), eating (OR = 1.626, 95% CI = 1.093–2.417), nervousness (OR = 1.547, 95% CI = 1.014–2.360), and sleep (OR = 1.469, 95% CI = 1.980–2.203).
Conclusion: The principal factors were related to distress levels, housing problems, transportation issues, and emotional problems such as sadness, nervousness, lower functionality, and younger age. Therefore, psychosocial support is of considerable relevance in palliative care. These findings will help clinicians understand the distress of patients with advanced cancer in palliative care in Latin American countries.
BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce.
METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals.
CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed.
TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.
Patients with advanced cancer and their families frequently encounter clinical and logistical challenges related to end-of-life care. Hospice provides interdisciplinary and holistic care to meet patients' biomedical, psychosocial, and spiritual needs in the last phases of life. Despite increasing general acceptance and use among patients with cancer, hospice remains underused. Underuse stems from ongoing misconceptions regarding hospice and its purpose, coupled with the rapid development of novel anticancer treatments, such as immunotherapies and targeted therapies, that have changed the landscape of possibilities. Furthermore, rapid evolutions in how end-of-life care is structured and reimbursed for will affect how oncology patients will intersect with hospice care. In this review, we explore the current and future challenges to greater integration of hospice care in the care of patients with advanced cancer and propose five recommendations as part of the path forward.
Background: Cancer patients experience multiple symptoms throughout the course of the disease. We aimed to provide a comprehensive analysis of the symptom burden in patients with advanced cancer at admission to specialist palliative care (PC) services and seven days later to estimate the immediate impact of PC intervention.
Patient and methods: The analysis was based on an observational, prospective, multicenter study (named DEMETRA) conducted in Italy on new patients accessing network specialist PC centers during the period May 2017-November 2017. The prevalence and intensity of symptoms were assessed at baseline and after seven days using three tools including the Edmonton Symptom Assessment System (ESAS).
Results: Five PC centers recruited 865 cancer patients. Thirty-three different symptoms were observed at the baseline, the most frequent being asthenia (84.9%) and poor well-being (71%). The intensity of the most frequent symptoms according to ESAS ranged from 5.5 for asthenia to 3.9 for nausea. The presence and intensity of physical symptoms increased with increasing levels of anxiety and depression. After seven days, prevalence of nausea and breathlessness as well as intensity of almost all symptoms significantly decreased.
Conclusions: The study confirmed the considerable symptom burden of patients with advanced cancer. PC intervention has significantly reduced the severity of symptoms, despite the patients' advanced disease and short survival.
End-of-life care of critically ill adult patients with advanced or incurable cancers is imbued with major ethical challenges. Oncologists, hospitalists, and intensivists can inadvertently subjugate themselves to the perceived powers of autonomous patients. Therapeutic illusion and poor insight by surrogates in physicians' ability to offer accurate prognosis, missed opportunities and miscommunication by clinicians, and lack of systematic or protocolized approach represent important barriers to high-quality palliative care. Enhanced collaboration, models that allow clinicians and surrogates to share the burdens of decision, and institutional support for early integration of palliative care can foster an ethical climate.
Refugees are a highly vulnerable marginalized population with unique medical and psychosocial needs. Unfortunately, the Interim Federal Health Program (IFHP) in Canada partially covers the medical needs of refugee claimants but does not include hospice or home-based palliative care. This report describes the case of a refugee claimant cancer patient who was admitted to an inpatient tertiary cancer center medical oncology ward in Ontario, Canada, for [about] 11 months due to insufficient community-based palliative care resources available for patients covered by the IFHP. This case report highlights the differences in palliative care coverage between the provincial health care coverage, Ontario Health Insurance Plan, and federal health care coverage for refugees, IFHP, from a practical point of view, how this can affect the palliative care available for patients and their families, and the impact on the Canadian health care system.
The prevalence of cancer-related pain is 64% among patients with metastatic, advanced, or terminal cancer, 59% among patients undergoing anticancer treatment, and 33% among patients who completed curative treatment. According to the World Health Organization cancer pain relief guidelines, opioid analgesics are the mainstay analgesic therapy in addition to conventional first-step analgesics, such as non-steroidal anti-inflammatory drugs and acetaminophen. The indications for strong opioids have recently been expanded to include mild-to-moderate pain in addition to moderate-to-severe pain. The U.S. Centers for Disease Control and Prevention guidelines emphasize that realistic expectations should be weighed against potential serious harm from opioids, rather than relying on the unrealized long-term benefits of these drugs. Therefore, treatment strategies for both cancer-related chronic or acute pain have been unfortunately deviated from opioid analgesics. The barriers hindering adequate cancer-related pain management with opioid analgesics are related to the inadequate knowledge of opioid analgesics (e.g., effective dose, adverse effects, and likelihood of addiction or tolerance). To achieve adequate opioid availability, these barriers should be overcome in a clinically suitable manner. Genetic assessments could play an important role in overcoming challenges in opioid management. To balance the improvement in opioid availability and the prevention of opioid misuse and addiction, the following two considerations concerning opioids and genetic polymorphisms warrant attention: (A) pain severity, opioid sensitivity, and opioid tolerance; and (B) vulnerability to opioid dependence and addiction.
BACKGROUND: Myelophthisis (MPT) has been associated with a dreadful prognosis. Patients' access to palliative care (PC) and factors influencing its clinical outcomes are poorly described. Our aim was to analyze the impact of patient- and disease-specific characteristics on survival of patients with MPT and describe their use of PC in a resource-limited setting.
METHODS: Retrospective study including patients with solid tumor MPT, diagnosed between 1996 and 2018.
RESULTS: Seventy patients (median 58 years) were included. 58% were synchronously diagnosed with MPT at time of primary tumor diagnosis. Most common oncologic diagnoses were prostate (25.7%), gastrointestinal (20%), and breast (18.6%) neoplasms. Median overall survival (OS) was 1.9 months. Primaries other than prostate, breast, and lung (HR 1.37, 95% CI 1.15 - 1.8; p = 0.02) and transfusion requirements (HR 2.8, 95% CI 1.01 - 7.9; p = 0.04) were independently associated with decreased OS. Administration of multiple systemic therapeutic interventions (HR 0.15, 95% CI 0.06 - 0.39; p = 0.01) was the sole factor improving OS. Assessment by PC was pursued in 51.4% of patients. The median number of consults per patient was two, with no difference in assessment rate or consult number across different primaries (P = 0.96). Four cases of palliative sedation were reported, all performed by the primary care team.
CONCLUSION: MPT is highly heterogeneous and risk stratification to optimize the use of therapeutic interventions in unison with palliative interventions is needed to maximize efforts toward improving patient quality of life. There is an alarming need of PC services in the multidisciplinary management of patients within developing regions.
PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia.
METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey.
RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region.
CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.
OBJECTIVES: Assess whether frequently-used claims-based end-o-life (EOL) measures are associated with higher ratings of care quality.
DESIGN: Retrospective cohort study.
SETTING/PARTICIPANTS: Deceased fee--for-service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after-death survey (n = 2,559).
MEASUREMENTS: We examined claims-based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of “excellent” care in the last month of life and reports that hospice care began “at the right time.” Associations were assessed with logistic regression, adjusted by patient characteristics.
RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference -10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference -8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference -10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1–2 days before death 60.2% vs hospice 7–13 days 74.9%; adjusted difference +14.7 percentage points).
CONCLUSIONS: Claims-based measures of EOL care for cancer patients that reflect avoidance of hospital-based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.
PURPOSE: The main aim of this study was to determine the prevalence of ethical dilemmas in the end-of-life process in advanced cancer patients.
METHODS: We carried out a multicenter, cross-sectional, observational, prospective study in a cohort of cancer patients whose life expectancy was = 6 months. We recorded sociodemographic characteristics, diagnosis of cancer, symptom burden, cognitive and functional status, emotional impact, and sociofamilial risk factors. The main outcome measure was the detection of ethical dilemmas, based on the following definition: conflict in decision-making during the end-of-life process that involves the need to choose between morally acceptable opposing options, where none is clearly preferable to another.
RESULTS: We included 324 patients (mean age, 69 years; 58% men). We identified 117 dilemmas in 90 patients (27.8%). The dilemmas detected were as follows: (a) conflicts of information (adaptive denial, conspiracy of silence, information exceeding patient's desired limit), 15.7%; (b) discrepancies in proportionality (discussion on futility, rejection of treatment, withdrawal of life support measures), 16.7%; (c) unrealistic expectations about the outcome of clinical trials, 2.5%; and (d) request for euthanasia or medically assisted suicide, 1.2%. We observed a greater prevalence of ethical dilemmas in men, in patients receiving active cancer treatment, and in patients with emotional distress (p < 0.05).
CONCLUSIONS: The prevalence of ethical dilemmas during the end-of-life process in cancer patients is relevant. Most dilemmas were associated directly or indirectly with respect for patient autonomy. In this context, the communication skills of the health professionals and advanced care planning take on a key role.