IntroductionContext: In Portugal assisted death was approved in February 2020 by the Parliament, although the law is not yet in force.ObjectivesTo find out what doctors think about those practices.MethodsA link to a questionnaire was sent by email three times, at intervals of one week, to the doctors registered in the Northern Section of the Portuguese Medical Association, before the Parliamentary approval.ResultsThe questionnaire was returned by 1148 (9%) physicians. A minority of doctors would practice a form of assisted death under the present law or if it was legalized, but a higher percentage think that euthanasia should be legalized, and more would like to have that option if they themselves were in a terminal phase of a disease. Religion has a strong influence on the attitudes of doctors, so too does their contact with patients in a terminal phase, as doctors who deal with more patients with far advanced diseases are more likely to be unfavorable to assisted death. On the other hand, younger doctors are more in favor of these practices.ConclusionThe small percentage of questionnaires sent back is a weakness in this study and casts doubts on the generalizability of the conclusions. However, this is, so far, the best approximation to the opinions of Portuguese doctors on assisted death.
BACKGROUND: Family caregivers of patients on prolonged mechanical ventilation (PMV) may encounter challenges concerning medical decision-making besides witnessing patient suffering. Palliative care (PC) should be a good support for both patients and caregivers; however, for PMV families, PC is not always a choice through long companion time. This qualitative study clarifies family caregivers' burden of assisting patients on PMV and evaluates the need for PC information and support.
METHODS: Interviews were caregivers of patients on ventilator support for more than 60 days in five hospitals of the Taipei City Hospital System. Based on phenomenology, this study was conducted by using a semistructured questionnaire comprising three questions: (I) what was the most crucial moment of deciding to intubate? (II) how would you describe the quality of life of your ventilator-dependent family member? (III) what type of assistance do you expect from the PC team for your ventilator-dependent family member?
RESULTS: Twenty-one caregivers of patients on PMV in five hospitals of the Taipei City Hospital System agreed to participate in face-to-face interviews. The identified themes, including stressful decision-making, companion pain/discomfort, and unwillingness to accept PC, elucidated the difficulties experienced by caregivers when providing care.
CONCLUSIONS: Understanding family caregivers' experiences can enable physicians to improve communication with them, encourage the PC team to support them during surrogate decision-making for patients on PMV during critical moments, and enhance the overall PC service.
The World Health Organization recommends that "palliative care should be integrated as a routine element of all Undergraduate Medical Education." However, the provision of training for medical undergraduates is variable; only 18% of 51 European countries have mandatory training in palliative medicine. EDUPALL is an ERASMUS+ funded international collaborative project to develop and pilot an undergraduate program for training in palliative medicine. The objective of this study was to critically review and revise current European Association for Palliative Care (EAPC) Recommendations for the Development of Undergraduate Curricula in Palliative Medicine and translating these into an updated curriculum document. Clinicians, academics, and researchers from Romania, Ireland, Germany, Austria, Spain, and the United Kingdom reviewed the EAPC recommendations using a variant of consensus methodology, Nominal Group Technique. From the updated document, four working-groups translated each recommendation into a specific learning objective, and developed associated learning outcomes, stratified by domain: attitude, cognition, and skills. The outcomes and objectives were organized into discrete teaching units and transferred into a curriculum template, identifying notional hours, teaching, and assessment strategies. To ensure quality control, the draft template was circulated to experts from 17 European countries, together with a brief survey instrument, for peer review purposes. All 17 reviewers returned overwhelmingly positive comments. There was large agreement that: the teaching units were logically organized; learning outcomes covered core training needs; learning objectives provided guidance for teaching sessions; learning modalities were appropriately aligned; and assessment strategies were fit for purpose. An updated and standardized curriculum was developed, which provides a platform for the sequential development of the next phases of the EDUPALL project.
As the spread of the novel coronavirus disease 2019 (COVID-19) continues worldwide, health care systems are facing increased demand with concurrent health care provider shortages. This increase in patient demand and potential for provider shortages is particularly apparent for palliative medicine, where there are already shortages in the provision of this care. In response to the developing pandemic, our Geriatrics and Palliative (GAP) Medicine team formulated a 2-team approach which includes triage algorithms for palliative consults as well as acute symptomatic management for both patients diagnosed with or under investigation (PUI) for COVID-19. These algorithms provided a delineated set of guidelines to triage patients in need of palliative services and included provisions for acute symptoms management and the protection of both the patient care team and the families of patients with COVID-19. These guidelines helped with streamlining care in times of crisis, providing care to those in need, supporting frontline staff with primary-level palliative care, and minimizing the GAP team's risk of infection and burnout during the rapidly changing pandemic response.
BACKGROUND: Shenzhen is a rapidly growing city in China with a population of over 11 million. The Hong Kong University-Shenzhen Hospital (HKU-SZH) was established in 2012 as a new model of publicly funded health care in mainland China. The clinical oncology center of the HKU-SZH was launched in 2013 which pledged to provide integrated palliative care for advanced cancer patients. This study aims to retrospectively analyze the quality of end-of-life care amongst patients with advanced cancer during their last hospitalization in the HKU-SZH.
METHODS: Consecutive patients with advanced solid cancer who passed away in the HKU-SZH from March 2013 to February 2016 were analyzed. Clinical information regarding cancer diagnosis, anticancer treatments, and the aggressiveness of the treatment during the last month of life was recorded. The discussions on the Do-Not-Resuscitate (DNR) order with family members were reviewed.
RESULTS: From March 2013 to February 2016, 441 patients with advanced solid cancer passed away in the HKU-SZH. A minority of them (9.3%, 41/441) received cytotoxic chemotherapy in the last month of life. Younger patients had high odds of receiving chemotherapy in their last month of life (OR 2.6, P=0.006). Those who received chemotherapy in their last month of life showed a trend of higher odds of admission to the intensive care unit (OR 2.94, P=0.08). The vast majority of family members / care providers (92.3%, 407/441) consented to the DNR order suggested by oncologists. The rate of DNR acceptance in this cohort was higher than previous reports from mainland China. Within HKU-SZH, the rate was higher in the oncology center than in other departments (OR 5.1, P<0.001). The use of chemotherapy in the last month of life did not associated with the acceptance of DNR (OR 1.3, P=0.23).
CONCLUSIONS: The integrated oncology service of the new public hospital HKU-SZH achieved a satisfactory level of end-of-life care in patients with advanced cancer. Further studies are warranted to improve the early integration of palliative care service and to investigate the impact of palliative care on costeffectiveness of oncology service.
Conversations surrounding end of life and death can be difficult or taboo for some, meaning that matters of organ and body donation are not widely discussed. To Donate or Not to Donate? That is the Question! is a comic developed to raise awareness and challenge common misconceptions about donation by encouraging the publics to engage in informed discussions about the different options available. This case study proposes graphic medicine as an alternative method of presenting donation information to a public audience, and illustrates how the comic medium can communicate body donation information in an accessible and engaging way.
PURPOSE: As immune checkpoint inhibitors (ICIs) have transformed the care of patients with cancer, it is unclear whether treatment at the end of life (EOL) has changed. Because aggressive therapy at the EOL is associated with increased costs and patient distress, we explored the association between the Food and Drug Administration (FDA) approvals of ICIs and treatment patterns at the EOL.
METHODS: We conducted a retrospective, observational study using patient-level data from a nationwide electronic health record-derived database. Patients had advanced melanoma, non-small-cell lung cancer (NSCLC; cancer types with an ICI indication), or microsatellite stable (MSS) colon cancer (a cancer type without an ICI indication) and died between 2013 and 2017. We calculated annual proportions of decedents who received systemic cancer therapy in the final 30 days of life, using logistic regression to model the association between the post-ICI FDA approval time and use of systemic therapy at the EOL, adjusting for patient characteristics. We assessed the use of chemotherapy or targeted/biologic therapies at the EOL, before and after FDA approval of ICIs using Pearson chi-square test.
RESULTS: There was an increase in use of EOL systemic cancer therapy in the post-ICI approval period for both melanoma (33.9% to 43.2%; P < .001) and NSCLC (37.4% to 40.3%; P < .001), with no significant change in use of systemic therapy in MSS colon cancer. After FDA approval of ICIs, patients with NSCLC and melanoma had a decrease in the use of chemotherapy, with a concomitant increase in use of ICIs at the EOL.
CONCLUSION: The adoption of ICIs was associated with a substantive increase in the use of systemic therapy at the EOL in melanoma and a smaller yet significant increase in NSCLC.
BACKGROUND: Patient shadowing is an experiential technique intended to enable those who shadow to understand care experience from the patient's point of view. It is used in quality improvement to bring about change that focuses on what is important for patients.
AIM: To explore the acceptability of patient shadowing for health-care staff, the impact of the experience and subsequent motivations to make improvements.
METHOD: A qualitative study with a diverse sample of 20 clinical and non-clinical health-care staff in different end-of-life settings. Data were analysed thematically.
RESULTS: Anticipated anxieties about shadowing did not materialize in participant accounts, although for some it was a deeply emotional experience, intensified by being with patients who were at the end of life. Shadowing not only impacted on participants personally, but also promoted better insights into the experience of patients, thus focusing their improvement efforts. Participants reported that patients and families who were shadowed welcomed additional caring attention.
CONCLUSION: With the right preparation and support, patient shadowing is a technique that engages and motivates health-care staff to improve patient-centred care.
To examine the association between physical activity and the reported use of complementary medicine by patients with breast and gynecological cancer referred or self-referred to a complementary/integrative medicine (CIM) consultation within a palliative care context.
Retrospective observational study analyzing the medical files of patients referred to a CIM consultation provided within a specialized integrative oncology clinic for demographic and cancer-related parameters; participation in physical exercise and activities; and current use of nonconventional medical practices. Quality of life (QoL) outcomes were assessed during the initial CIM consultation by using the Edmonton Symptom Assessment Scale (ESAS) tool.
Among the 162 patient files examined, participation in physical activities was reported in 152, of whom 83 were identified as active and 69 inactive according to the American Cancer Society guidelines. A logistic multivariate regression model showed that physical activity was associated with higher rates of herbal/dietary supplement use for noncancer-related outcomes (odds ratio = 7.21, 95% confidence interval [CI] 1.6-32.46, p = 0.01); more frequently reported use of acupuncture for cancer-related outcomes (odds ratio = 7.79, 95% CI 1.93-31.5, p = 0.004); and lower ESAS scores for well-being (odds ratio = 0.77, 95% CI 1.0.65-0.92, p = 0.004), indicating better QoL.
Physical activity was found to be associated with a greater use of CIM (specifically herbal/dietary supplement use and acupuncture) in patients with breast and gynecological cancer during oncology treatment. Further research is needed to explore whether CIM use and physical activity are influenced by patients' health-belief models of care, and whether the CIM consultation can promote physical activity among these patients.
Introduction: For patients with brain metastases, palliative radiation therapy (RT) has long been a standard of care for improving quality of life and optimizing intracranial disease control. The duration of time between completion of palliative RT and patient death has rarely been evaluated.
Methods: A compilation of two prospective institutional databases encompassing April 2015 through December 2018 was used to identify patients who received palliative intracranial radiation therapy. A multivariate logistic regression model characterized patients adjusting for age, sex, admission status (inpatient versus outpatient), Karnofsky Performance Status (KPS), and radiation therapy indication.
Results: 136 consecutive patients received intracranial palliative radiation therapy. Patients with baseline KPS <70 (OR = 2.2; 95%CI = 1.6-3.1; p < 0.0001) were significantly more likely to die within 30 days of treatment. Intracranial palliative radiation therapy was most commonly delivered to provide local control (66% of patients) or alleviate neurologic symptoms (32% of patients), and was most commonly delivered via whole brain radiation therapy in 10 fractions to 30 Gy (38% of patients). Of the 42 patients who died within 30 days of RT, 31 (74%) received at least 10 fractions.
Conclusions: Our findings indicate that baseline KPS <70 is independently predictive of death within 30 days of palliative intracranial RT, and that a large majority of patients who died within 30 days received at least 10 fractions. These results indicate that for poor performance status patients requiring palliative intracranial radiation, hypofractionated RT courses should be strongly considered.
BACKGROUND: Although the Belgian assessment pathway for legal euthanasia requires the engagement of at least one psychiatrist, little is known about psychiatrists' attitudes towards euthanasia for adults with psychiatric conditions (APC). This study aims to gauge psychiatrists' attitudes towards and readiness to engage in euthanasia assessment and/or performance procedures in APC.
METHODS: This cross-sectional survey study was performed between November 2018 and April 2019. The survey was sent to a sample of 499 eligible psychiatrists affiliated to the Flemish Association for Psychiatry, a professional association that aims to unite and represent all psychiatrists working in Flanders, the Dutch-speaking, northern part of Belgium. The Association's members comprise an estimated 80-90% of all psychiatrists active in Flanders. Only psychiatrists working with APC (83% of the association's total membership) were included. Factorial Anova and Chi Square tests were performed to examine if and to what extent psychiatrists' backgrounds were associated with, respectively, their attitudes and their readiness to play a role in euthanasia procedures concerning APC.
RESULTS: One hundred eighty-four psychiatrists completed the questionnaire (response rate 40.2%); 74.5% agree that euthanasia should remain permissible for APC. However, 68.9% question some of the approaches taken by other physicians during the euthanasia assessment and only half consider euthanasia assessment procedures compatible with the psychiatric care relationship. Where active engagement is concerned, an informal referral (68%) or preliminary advisory role (43.8%) is preferred to a formal role as a legally required advising physician (30.3%), let alone as performing physician (< 10%).
CONCLUSION: Although three quarters agree with maintaining the legal option of euthanasia for APC, their readiness to take a formal role in euthanasia procedures appears to be limited. More insight is required into the barriers preventing engagement and what psychiatrists need, be it education or clarification of the legal requirements, to ensure that patients can have their euthanasia requests assessed adequately.
CONTEXT: Currently, systematic evidence of prevalence of clinically significant depressive symptoms in people with extremely short prognoses is not available to inform its global burden, assessment, and management.
OBJECTIVES: To determine the prevalence of clinically significant depressive symptoms in people with advanced life-limiting illnesses and extremely short prognoses (range of days to weeks).
METHODS: A systematic review and meta-analysis (random effects model) were performed (PROSPERO: CRD42019125119). MEDLINE, Embase, PsycINFO, CINAHL, and CareSearch were searched for studies (1994-2019). Data were screened for prevalence of clinically significant depressive symptoms (assessed using validated depression-specific screening tools or diagnostic criteria) of adults with advanced life-limiting illnesses and extremely short prognoses (defined by survival or functional status). Quality assessment was performed using the Joanna Briggs Institute Systematic Reviews Checklist for Prevalence Studies for individual studies, and Grading of Recommendations Assessment, Development and Evaluation (GRADE) across studies.
RESULTS: Thirteen studies were included. The overall pooled prevalence of clinically significant depressive symptoms in adults with extremely short prognoses (n = 10 studies; extremely short prognoses: N = 905) using depression-specific screening tools was 50% (95%CI: 29%-70%; I2 = 97.6%). Prevalence of major and minor depression were 10% (95%CI: 4%-16%) and 5% (95%CI: 2%-8%), respectively. Major limitations included high heterogeneity, selection bias and small sample sizes in individual studies.
CONCLUSIONS: Clinically significant depressive symptoms were prevalent in people with advanced life-limiting illnesses and extremely short prognoses. Clinicians need to be proactive in the recognition and assessment of these symptoms to allow for timely intervention.
In a bid to slow the rate of spread of the virus, the Federal Government of Nigeria, on several occasions, imposed targeted lockdown measures in areas with rapid increase of Covid-19 cases. The states in which the federal government imposed the targeted lockdown included Lagos, Ogun, and the Federal Capital Territory in Abuja. Some States in the country imposed partial lockdown and closure of interstate boarders. Curfews have also been introduced in all the states nationwide. To alleviate the effects of the lockdown, the Federal Government of Nigeria rolled out palliative measures for targeted groups. However, lamentations have trailed the distribution of government palliatives by the masses. Citizens allege that the process of distribution of palliatives had been politicized.
Introduction: Dignity Therapy (DT) is a brief, individualized, narrative psychotherapy developed to reduce psychosocial and existential distress, and promote dignity, meaning, and hope in end of life patients. Previous studies have shown that DT was effective in reducing anxiety and depression, and improving dignity-related distress. However, less is known about its efficacy on spiritual well-being. The aim of this study is to contribute to the existing literature by investigating the effects of DT on specific dimensions of spiritual well-being, demoralization and dignity-related distress in a sample of terminally ill patients. Methods: A randomized, controlled trial was conducted with 64 terminally ill patients who were randomly assigned to the intervention group (DT + standard palliative care) or the control group (standard palliative care alone). The primary outcome measures were Meaning, Peace, and Faith whereas the secondary outcome measures were (loss of) Meaning and purpose, Distress and coping ability, Existential distress, Psychological distress, and Physical distress. All measures were assessed at baseline (before the intervention), 7-10 and 15-20 days after the baseline assessment. The trial was registered with ClinicalTrials.gov (Protocol Record NCT04256239). Results: The MANOVA yielded a significant effect for the Group X Time interaction. ANOVA with repeated measures showed a significant effect of time on peace and a significant Group X Time interaction effect on peace. Post hoc comparisons revealed that, while there was a decrease in peace from pre-treatment to follow-up and from post-treatment to follow-up in the control group, there was no such trend in the intervention group. Discussion: This study provides initial evidence that patients in the DT intervention maintained similar levels of peace from pre-test to follow-up, whereas patients in the control group showed a decrease in peace during the same time period. We did not find significant longitudinal changes in measures of meaning, faith, loss of meaning and purpose, distress and coping ability, existential, psychological and physical distress. The findings of our study are of relevance in palliative care and suggest the potential clinical utility of DT, since they offer evidence for the importance of this intervention in maintaining peace of mind for terminally ill patients.
Methods: As in life at large, ideas of 'self' underlie a great deal of theory and practice in palliative care and in bereavement care, they are frequently implicit, being part of shared cultural assumptions, but may assume a degree of theoretical abstraction when fostered by professionals. This article considers the latter, arguing for an interpretation of 'self' influenced by the anthropological notion of dividual or composite personhood and not for that of the autonomous, relatively insular individual typified in much postmodern culture.
Results: After depicting both types of personhood, the article explores Western theories of grief typified in the approaches of attachment and loss, continuing bonds with the dead and narrative approaches to identity.
Discussion: The dividual approach to personhood then drives a theoretical critique of those grief theories as a means of reflecting upon palliative and bereavement care.
Conclusion: This alignment of palliative and bereavement care is seen as an entailment of the dividual approach to personhood, while further consequences are raised for analysing memory, dreams and visitations of the dead, as well as providing a potential perspective upon memory loss and the dissonance experienced by relatives of someone who no longer recognizes them.
Importance: Despite requirements of informed consent, patients with advanced cancer often receive palliative chemotherapy (PC) without understanding that the likelihood of cure is remote.
Objective: To determine whether a PC educational video and booklet at treatment initiation could improve patients' understanding of its benefits and risks.
Interventions: Regimen-specific PC videos and booklets presenting information about logistics, potential benefits, life expectancy (optional), adverse effects, and alternatives. Videos featured authentic patients sharing diverse experiences. After receiving treatment recommendations, research assistants distributed materials to patients for independent review.
Design, Setting, and Participants: Multicenter randomized clinical trial of patients with advanced colorectal or pancreatic cancer starting first-line or second-line PC in 5 US cancer centers with enrollment from June 2015 to September 2017 and follow-up to December 2019.
Main Outcomes and Measures: The primary outcome was accurate expectations of chemotherapy benefits at 3 months, defined as responding "not at all likely" to "What is your understanding of how likely the chemotherapy is to cure your cancer?" (from the Cancer Care Outcomes Research and Surveillance study). Secondary outcomes included understanding of adverse effects, decisional conflict (SURE test), regret (Decisional Regret Scale), and distress (Functional Assessment of Cancer Therapy-General emotional well-being subscale).
Results: Among 186 patients with advanced colorectal or pancreatic cancer who were starting first-line or second-line PC (94 randomized to usual care, 92 to intervention; mean [SD] age, 59.3 [12.6] [range, 28-86] years; 107 [58%] male; 118 [63.4%] colorectal and 68 [36.6%] pancreatic cancer), most patients wanted "a lot" of information or "as much information as possible" about adverse effects (149, 80.1%), likelihood of cure (148, 79.6%), and prognosis (148, 79.6%). Among the intervention arm, 59 (78%) reviewed the booklet and 30 (40%) reviewed the video within 2 weeks. The primary outcome did not differ between intervention and control arms (52.6%; 95% CI, 40.3%-65.0%; vs 55.5%; 95% CI, 45.1%-66.0%). Accurate adverse effect understanding was more common among intervention than control patients (56.0%; 95% CI, 44.3%-67.7%; vs 40.2%; 95% CI, 29.5%-50.9%; P = .05), although this did not meet the threshold for statistical significance. The intervention did not increase distress, despite frank prognostic information. Other secondary outcomes were similar.
Conclusions and Relevance: Provision of an educational video and booklet did not alter patients' expectation of cure from PC. Alternative delivery strategies, such as integration with nurse teaching, could be explored in future studies.
Trial Registration: ClinicalTrials.gov Identifier: NCT02282722.
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child's end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.
CONTEXT: Advance care planning (ACP) is vital for end-of-life care management. Experiences as informal family caregivers might act as a catalyst to promote ACP.
OBJECTIVES: We investigated the association between ACP discussions and caregiving experiences.
METHODS: A nationwide survey in Japan was conducted in December 2016 using a quota sampling method to select a sample representative of the general Japanese population. The responses of 3167 individuals aged 20-84 years (mean age: 50.9 ± 16.8) were analyzed. The outcome was measured by asking if respondents had ever engaged in ACP discussions. The exposure was measured by asking whether and for how long respondents had experience as informal caregivers for family members. We analyzed informal caregiving experience related to the occurrence of ACP discussions using multivariable logistic regression models that adjusted for possible covariates.
RESULTS: Respondents with informal caregiving experience had significantly higher odds of having ACP discussions than those without caregiving experience (adjusted odds ratio: 1.93, 95% CI [1.63, 2.29]). Stronger effects were identified in younger adults (aged 20-65 years) and those with a higher education level (education duration > 12 years) than in older adults (aged ≥ 65 years) and those with a lower education level, respectively.
CONCLUSION: Experiences as informal caregivers for family members may facilitate ACP discussions among Japanese adults, especially younger adults with higher educational attainment. Our findings may help healthcare providers screen those at risk for inadequate ACP discussions, and informal caregiving experience should be considered when healthcare providers initiate discussions of end-of-life care.