Médecin de famille formée aux soins palliatifs, l'auteure expose trois conditions dont le respect peut garantir de connaître une mort sereine tout en assurant une préparation à cette ultime étape de l'existence à travers une vie épanouie. Ces conditions, liées à la joie profonde, à l'ouverture aux autres et à la paix intérieure, sont accompagnées de nombreux exercices afin d'apprendre à les vivre.
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.
Introduction: It has been suggested that palliative care integrated into standard cancer treatment from the early phase of the disease can improve the quality of life of patients with cancer. In this paper, we present the protocol for a multicentre randomised controlled trial to examine the effectiveness of a nurse-led, screening-triggered, early specialised palliative care intervention programme for patients with advanced lung cancer.
Methods and analysis: A total of 206 patients will be randomised (1:1) to the intervention group or the control group (usual care). The intervention, triggered with a brief self-administered screening tool, comprises comprehensive need assessments, counselling and service coordination by advanced-level nurses. The primary outcome is the Trial Outcome Index of the Functional Assessment of Cancer Therapy (FACT) at 12 weeks. The secondary outcomes include participants’ quality of life (FACT-Lung), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), illness perception (Prognosis and Treatment Perceptions Questionnaire), medical service use and survival. A mixed-method approach is expected to provide an insight about how this intervention works.
Ethics and dissemination: This study has been approved by the Institutional Review Board of the National Cancer Center Japan (approval number: 2016-235). The findings will be disseminated through peer-reviewed publications and conference presentations and will be reflected on to the national healthcare policy.
Trial registration number UMIN000025491.
Introduction: Healthcare professionals (HCPs) experience difficulties in timely recognising and directing palliative care (PC) needs of their patients with chronic heart failure (CHF). The aim of this study was to develop a comprehensive tool to enable HCPs in timely recognising and directing PC needs in CHF.
Methods: A four-stage mixed-method study was performed. Stage 1: identification of needs and questions of patients and families; stage 2: prioritisation and refinement of the needs and questions; stage 3a: testing and online feedback on V.1; stage 3b: selecting and refining care recommendations; stage 4: testing and review of V.2. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. In total, 16 patients, 12 family members and 54 HCPs participated.
Results: A comprehensive set of 13 PC needs was identified, redefined and tested. The resulting tool, called Identification of patients with HeARt failure with PC needs (I-HARP), contains an introduction prompt with open questions to start the conversation, 13 closed screening questions with additional in-depth questions, and recommendations on actions for identified needs.
Conclusion: I-HARP contains an evidence-based set of questions and palliative CHF care suggestions for HCPs in the Netherlands. The resulting tool, approved by HCPs, patients and family members, is a promising guidance for HCP to timely recognise and direct PC needs in CHF.
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.
INTRODUCTION: Current research on prostate cancer is heavily focused on early detection and new treatments. There is a lack of research on the overall morbidity prostate cancer survivors face and the amount of healthcare treatment they receive toward the end of their lives. Identifying these care needs will allow appropriate healthcare modeling, resource allocation and service re-design to ensure higher quality care toward the end of life. The aim of this study is to quantify and analyze the use of healthcare services by patients dying with but not necessarily of prostate cancer.
METHODS: All patients who died with a diagnosis of prostate cancer during a 2-year period at a single hospital were included. Data on outpatient attendances, elective and emergency admissions and palliative care involvement in the 12 months prior to death were collected.
RESULTS: A total of 77 patients were included and of these, 60 (78.0%) had 545 scheduled appointments with 473 (86.8%) attendances. More non-attendances occurred in the last 6 months of life; 56 vs 16, p < 0.001. Nurse led clinics doubled in the last 6 months of life, 117 vs 66. There were 173 admissions from 63 (81.8%) patients resulting in 1816 days inpatient stay. This averaged to 2.7 admissions per patient for 10.5 days per episode. 32 (41.6%) patients were seen by palliative care resulting in 192 visits in total. 78 (40.6%) were inpatient and 114 (59.4%) were community reviews.
CONCLUSIONS: In the last year of life, prostate cancer patients use a considerable amount of healthcare resources. Understanding this clinical and economical burden is important for healthcare remodeling to provide better quality care that is cost effective.
Background: Timely palliative care in frail older persons remains challenging. Scales to identify older patients at risk of functional decline already exist. However, factors to predict short term mortality in older hospitalized patients are scarce.
Methods: In this prospective study, we recruited patients of 75 years and older at the department of cardiology and geriatrics. The usual gait speed measurement closest to discharge was chosen. We used the risk of dying within 1 year as parameter for starting palliative care. ROC curves were used to determine the best cut-off value of usual gait speed to predict one-year mortality. Time to event analyses were assessed by COX regression.
Results: On the acute geriatric ward (n = 60), patients were older and more frail (assessed by Katz and iADL) in comparison to patients on the cardiology ward (n = 82); one-year mortality was respectively 27 and 15% (p = 0.069). AUC on the acute geriatric ward was 0.748 (p = 0.006). The best cut-off value was 0.42 m/s with a sensitivity and specificity of 0.857 and 0.643. Slow walkers died earlier than faster walkers (HR 7.456, p = 0.011), after correction for age and sex. On the cardiology ward, AUC was 0.560 (p = 0.563); no significant association was found between usual gait speed and survival time.
Conclusions: Usual gait speed may be a valuable prognostic factor to identify patients at risk for one-year mortality on the acute geriatric ward but not on the cardiology ward.
Objectives: The aim of this work is to describe the multidisciplinary model of intervention applied and the characteristics of some COVID-19 patients assisted by the hospital palliative care unit (UCP-H) of an Italian hospital in Lombardy, the Italian region most affected by the COVID-19 pandemic.
Methods: A retrospective study was conducted on patients admitted to the A. Manzoni Hospital (Lecco, Lombardy Region, Italy) and referred to the UCP-H between 11 March 2020 and 18 April 2020, the period of maximum spread of COVID-19 in this area. Data were collected on the type of hospitalisation, triage process, modality of palliative care and psychological support provided.
Results: 146 COVID-10 patients were referred to the UCP-H. Of these, 120 died during the observation time (82%) while 15 (10.2%) improved and were discharged from the UCP-H care. 93 had less favourable characteristics (rapid deterioration of respiratory function, old age, multiple comorbidities) and an intensive clinical approach was considered contraindicated, while 48 patients had more favourable presentations. Mean follow-up was 4.8 days. A mean of 4.3 assessments per patient were performed. As to respiratory support, 94 patients were treated with oxygen only (at different volumes) and 45 with Continuous Positive Airway Pressure (CPAP).
Conclusion: The ongoing pandemic highlighted the need for dedicated palliative care teams and units for dying patients. This work highlights how palliative medicine specialist can make a fundamental contribution thanks to their ability and work experience in an organised multiprofessional context.
Objective: The purpose of this study was to explore healthcare provider-perceived challenges to HBPC patient referral and elicited providers’ feedback for overcoming these challenges.
Methods: We conducted a qualitative study using semi-structured interviews with 25 Medicaid managed care providers (primary care physicians, nurse practitioners, and care managers) working in the greater Los Angeles area. Our interview protocol elicited providers’ knowledge and awareness of palliative care; perceived barriers to HBPC referral; and suggestions for overcoming these barriers. We analyzed verbatim transcripts using a grounded theory approach.
Results: Themes related to referral barriers included providers’ lack of palliative care knowledge and clarity regarding referral processes, provider reluctance to refer to HBPC, and provider culture. Providers also identified patient-level barriers, including financial barriers, reluctance to have home visits, health literacy, cultural barriers, and challenges related to living situations. Themes related to methods for overcoming challenges included increased HBPC education and outreach to providers, specifically by HBPC agency staff.
Conclusions: Findings from this study underscore the need for additional palliative care education for Medicaid healthcare providers. They point to the need for novel strategies and approaches to address the myriad barriers to patient identification and referral to HBPC.
Worldwide, many patients with cancer, are infrequently referred to palliative care or are referred late. Oncologists and haematologists may act as gatekeepers, and their views may facilitate or hinder referrals to palliative care. This review aimed to identify, explore and synthesise their views on referrals systematically.
Objectives: To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.
Design: Cross-sectional postbereavement survey.
Setting: Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany.
Participants: 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.
Results: For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71).
Conclusions: Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements.
Trial registration number DRKS00011925.
The Advancing American Kidney Health (AAKH) Initiative aims to promote high-value patient-centered care by improving access to and quality of treatment options for kidney failure. The 3 explicit goals of the initiative are to reduce the incidence of kidney failure, increase the number of available kidneys for transplantation, and increase transplantation and home dialysis. To ensure a patient-centered movement toward home dialysis modalities, actionable principles of palliative care, including systematic communication and customized treatment plans, should be incorporated into this policy. In this perspective, we describe 2 opportunities to strengthen the patience-centeredness of the AAKH Initiative through palliative care: (1) serious illness conversations should be required for all dialysis initiations in the End-Stage Renal Disease Treatment Choices model, and (2) conservative kidney management should be counted as a home modality alongside peritoneal dialysis and home hemodialysis. A serious illness conversation can help clinicians discern whether a patient's goals and values are best respected by a home dialysis modality or whether a nondialytic strategy such as conservative kidney management should be considered. An intensive and careful patient- and family-centered selection process will be necessary to ensure that no patient is pressured to forego conventional dialysis.
Background: The aim of this study was to examine palliative care involvement in patients with operative mortality after cardiac surgery, to gain a better understanding of this high-risk population and factors influencing referral.
Methods: This is a retrospective review using data submitted to the Society of Thoracic Surgeons National Database.
Results: The total study population included 93 patients with operative mortality, only 30% of whom had palliative care involvement. The median time from first palliative care involvement to death was 6 days. Nearly 40% of patients had a status labeled as elective at the time of surgery.
Conclusion: Our findings suggest that patient mortality risk for elective surgery is being underestimated, or the indications for palliative care consultation in high-risk patients is going unrecognized. Such knowledge may facilitate earlier palliative care involvement, with the goal of improved quality of life for cardiac patients.
Chronic obstructive pulmonary disease is a highly symptomatic disease that may lead to significant morbidity. Even with optimal therapy, the patient's quality of life can be severely affected. These symptoms include dyspnea, anxiety, depression, and malnourishment. Palliative care is a branch of medicine that specializes in the care of patients with a terminal illness no matter what stage of the disease they are in. It implements a family-centered approach to help patients deal with their symptoms. It also helps with shared decision-making and advanced care planning.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
The practice of surgical palliative care is not new. Dr Balfour M. M. Mount, a retired urologic surgeon is considered the father of North American Palliative Care and coined the term Palliative Care in 1975. Dr Geoffrey P. Dunn, a retired general surgeon and hospice and palliative medicine specialist along with other like minded surgical colleagues were instrumental in developing the field of surgical palliative care. Dr Olga Jonasson, championed the American Board of Surgery becoming one of the sponsoring boards of the Hospice and Palliative Medicine certifying exam. Dr Anne Mosenthal advocated for palliative care to be integrated as parallel clinical aims so espoused in the Trauma Quality and Improvement Program Palliative Care Best Practice Guidelines. Dr Mosenthal currently chairs the American College of Surgeons Committee on Surgical Palliative Care. This introductory article is a brief history about the origins of surgical palliative care and sheds light on the current landscape of surgeons integrating primary and specialty palliative care into surgical practice. The aim of this surgical palliative care symposium is to take everyday surgical problems and highlight the application and benefit of palliative care when treating surgical patients with serious illness. Integrating palliative care principles into standard clinical management is evidenced based patient-centered practice.
In end-of-life care, deprescribing practices may vary considerably from one practitioner to the next, although most published frameworks for evaluating medication appropriateness in advanced illness consider three key principles (1) patient and caregiver goals, (2) remaining life expectancy (LE), and (3) medication time to benefit (TTB). The objective of this article is to provide clinicians with a structured, consistent approach for deprescribing that does not replace clinical judgment or the preferences of patients and their families but enhances it through clinical data. The emphasis will be on the time component of published models, including how to estimate remaining LE and medication TTB. Through case examples of two new hospice admissions, LE and TTB will be estimated and applied to deprescribing decisions. This time-centric approach may satisfy the palliative and hospice clinicians' desire for clear clinical justification for medication discontinuation while at the same time providing a strategy for communicating deprescribing rationale to patients and families.
Background: To culturally adapt and validate the Integrated Palliative care Outcome Scale to European Portuguese.
Methods: Multi-centred observational study with 2 assessment points. Data were collected in nine centres using consecutive sampling. All patients were screened for eligibility. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness, read, write and understand Portuguese. Translation and back translation with independent native speakers blind to the original measure created a Portuguese version, which was culturally adapted using cognitive interviews. For psychometric testing, the COSMIN checklist was followed. Reliability and content validity were assessed for patient and staff versions. Construct and criterion validity were tested for patient version.
Results: 1703 individuals were screened between July 1st 2015 and February 2016, 135 (7.9%) were included. Mean age was 66.8 years (SD 12.7), 58 (43%) were female. Most patients (109; 80.7%) had a cancer diagnosis. Cronbach’s alpha showed good internal consistency, 0.657 for patient, 0.705 for staff versions. Intraclass correlation coefficient testing reproducibility revealed very good reliability, 0.794–0.950 for patient and 0.456–0.925 for staff versions. There was good content validity and significant results for construct validity. Physical symptoms were better detected by females. IPOS could discriminate: practical issues in different places of care, based on cancer diagnosis, physical and emotional symptoms based on life expectancy both for patient and professional dimensions, physical and emotional symptoms based on phase of illness, for professional dimensions, and physical symptoms from the patients’ viewpoint.
Conclusions: The Portuguese IPOS is a reliable and valid measure.
CONTEXT: Evidence from prior public health emergencies demonstrates palliative care's importance to manage symptoms, make advance care plans, and improve end-of-life outcomes.
OBJECTIVE: To evaluate the preparedness and capacity of palliative care services in the Middle-East and North Africa region to respond to the COVID-19 pandemic.
METHODS: A cross-sectional online survey was undertaken, with items addressing the WHO International Health Regulations. Non-probabilistic sampling was used, and descriptive analyses were conducted.
RESULTS: Responses from 43 services in 12 countries were analysed. Half of respondents were doctors (53%), and services were predominantly hospital-based (84%). All but one services had modified at least one procedure to respond to COVID-19. Do Not Resuscitate (DNR) policies were modified by a third (30%) and unavailable for a fifth (23%). While handwashing facilities at points of entry were available (98%), a third had concerns over accessing disinfectant products (37%), soap (35%), or running water (33%). The majority had capacity to use technology to provide remote care (86%) and contact lists of patients and staff (93%), though only two-fifths had relatives' details (37%). Respondents reported high staff anxiety about becoming infected themselves (median score 8 on 1-10 scale), but only half of services had a stress management procedure (53%). Three-fifths had plans to support triaging COVID-19 patients (60%) and protocols to share (58%).
CONCLUSION: Participating services have prepared to respond to COVID-19, but their capacity to respond may be limited by lack of staff support and resources. We propose recommendations to improve service preparedness and relieve unnecessary suffering.
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.