Objectives: Discipline of palliative care is still evolving in developed parts of the world while it remains at an infantile stage in Sri Lanka which has not been formally assessed as of today. We aimed at evaluating the level of palliative care knowledge and opinions among young medical graduates. A descriptive cross-sectional study was carried out among pre-residency medical graduates of Sri Lanka through a social media based online survey. The pre-tested questionnaire assessed the level of knowledge on general principles, service organization, clinical management and ethical considerations while it also evaluated their opinions.
Results: Response rate was 35.8% (n = 351). The average score among the respondents was 37.25% [standard deviation (SD) = 11.975]. Specific knowledge on “general principles” was adequate (score = 50%) with an average of 62.61%, SD = 24.5 while “ethics” was observed to be the area with the poorest knowledge (average score = 19.55%, SD = 22). Average scores for “service organization” and “managerial aspects” were 34.54%, SD = 17.6 and 32.26%, SD = 22.3, respectively. The majority (> 90%) believed that de-novo establishment of hospice, hospital and community-based palliative services would sustainably improve holistic patient care. Measures must be taken to optimize basic palliative care knowledge among the undergraduates in view of achieving Universal Health Coverage in the long term.
BACKGROUND: Patients with advanced cancer are increasingly discharged from inpatient settings following focused symptom management admissions. Thromboprophylaxis (TP) is recommended for patients with cancer admitted to acute care settings; less is known about TP use in palliative care (PC) settings. This study explored the opinions of Canadian medical oncologists (MO) and PC physicians regarding the use of TP for inpatients with advanced cancer.
METHODS: A fractional factorial survey designed to evaluate the impact of patient factors (age, clinical setting, reason for admission, pre-admission performance status (Eastern Cooperative Oncology Group; ECOG), and risk of bleeding on anticoagulation) and physician demographics on recommending TP was administered by email to Canadian MO and PC physicians. Each respondent received eight vignettes randomly selected from a set of 32. Hierarchical regression was used to evaluate the odds of prescribing TP adjusted for patient factors.
RESULTS: 606 MO and 491 PC physicians were surveyed; response rates were 11.1% and 15.0%, respectively. MO were predominantly male (59.7%); PC female (60.3%); most worked in academic environments (90.3% MO; 73.9% PC). Multivariable hierarchical logistic regression demonstrated that all patient factors except age were associated with prescribing TP (ORs range: from 1.34 (95% CI 1.01 to 1.77) for good ECOG, to 2.53 (95% CI 1.9 to 3.37), for reversible reason for admission). Controlling for these factors, medical specialty was independently associated with recommending TP (OR for MO 2.09 (95% CI 1.56 to 2.8)).
CONCLUSIONS: MO have higher odds of recommending TP for inpatients with advanced cancer than PC physicians. Further research exploring the drivers of these differing practices is warranted.
Après avoir présenté les arguments pour et contre la légalisation de l'euthanasie, l'auteur pointe la nécessité de ne pas imposer son opinion et de respecter les valeurs et les convictions religieuses et morales de chacun. Il mentionne également les nouvelles problématiques qui s'ajoutent à ce débat : l'euthanasie des mineurs, des malades psychiatriques et des personnes démentes.
Background: Critical care consensus groups recommend providing bereavement support; however, little is known about what cardiac intensive care patients' families would find useful and beneficial in their grieving process.
Aim and objectives: To describe cardiac intensive care unit (ICU) patients' families' opinions on six common components of a bereavement programme.
Design: Qualitative, exploratory and descriptive.
Methods: Families were recruited from a cardiac ICU 13-15 months after their loved one's death. Families were interviewed using a semi-structured questionnaire. The research team analysed interview transcripts to assess and categorize families' opinions on six bereavement components.
RESULTS: Twelve family members were interviewed. Most were female (n = 8, 67%), spouses (n = 10, 83%) and white (n = 10, 83%), with a mean age (SD) of 58.4 years (16.7). Families' overall opinions of the bereavement brochure were positive, stating it was helpful in providing information about the grieving process. Families described the sympathy card as "meaningful" and "touching," although they rated it neutral in providing comfort. Most participants felt that a follow-up telephone call was unnecessary except to answer lingering questions they had. Many participants favoured the unit offering counselling services because they found therapy helpful in their grieving process. Participants had mixed feelings about a memory box; they believed it was an individual preference and should be handled in a sensitive manner. Most would not have attended a memorial service if offered because of traffic, distance, concerns about stressful feelings on returning to the hospital or because they already honoured their loved ones through a personalized memorial service.
Conclusions: Participants varied in their opinions about what bereavement services may be useful; however, this study provides insight about services that cardiac critical care units may consider when adding bereavement support.
Relevance to clinical practice: Family perspectives about bereavement needs can help structure services offered by critical care units.
The consideration of laypeople’s views of conditions under which euthanasia is justifiable is important for policy decisions. In an online survey of US respondents, we examined how patient’s symptoms influence justifiability of euthanasia. Euthanasia was judged more justifiable for conditions associated with physical suffering and negative impact on other people. The weight given to physical suffering and negative impact on others in evaluation of justifiability of euthanasia also differed based on personal characteristics. The results suggest that public discourse about medical assistance in dying should take into account differences in its perceived justifiability for patients with different conditions.
Huit membres du personnel soignant belge échangent leurs point de vue sur la fin de vie, les soins palliatifs et la pratique de l'euthanasie. Ils évoquent leur expérience quotidienne et rendent compte de la complexité de certaines situations.
Supportive and palliative care at the end of life (EOL) is a core component of health systems. Providing care at the EOL may require the interaction of several care providers working in different settings including nursing homes, home care, hospices, and hospitals. This work aims to (a) provide evidence on the performance of EOL care for cancer patients across healthcare organizations, with a focus on the place of care, aggressive treatments, opioids, and the place of death and (b) analyze factors associated with dying in hospital. A population-based retrospective study was performed using administrative data from Tuscany region (Italy). Thirteen thousand sixty-six cancer patients who died in 2016 were considered. There is a marked variability in EOL care within regional areas, with the multilevel logistic regression highlighting a greater likelihood of dying in hospital for patients who were admitted to intensive care units or previously hospitalized. There is a lower probability of dying in acute care setting for patients assisted in hospices and in both hospital and hospices/home care and for patients treated with opioids. This intraregional variation highlights the need to improve EOL planning and rethink the delivery of supportive/palliative care. Further investigations on the preferences of patients may lead to more understanding.
Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.
The Royal College of Physicians is to remove its opposition to assisted dying and adopt a neutral stance on the issue after announcing the results of a poll of its members.
Of the 6885 doctors who responded to the poll (20% of the RCP’s members and fellows), 43% thought that the college should be opposed to changing the law on assisted dying. This was similar to the 44% when RCP members were last polled in 2014.
But the proportion of respondents wanting the RCP to support a change in the law increased to 32% in 2019, from 25% in 2014. A quarter of respondents (25%) in the latest poll thought that the RCP should be neutral, down from 31% in 2014.
BACKGROUND: Women who suffer an out-of-hospital cardiac arrest receive bystander cardiopulmonary resuscitation (CPR) less often than men. Understanding public perceptions of why this occurs is a necessary first step toward equitable application of this potentially life-saving intervention.
METHODS: We conducted a national survey of members of the public using Mechanical Turk, Amazon’s crowdsourcing platform, to determine reasons why women might receive bystander CPR less often than men. Eligible participants were adults (=18 years) located in the United States. Responses were excluded if the participant was not able to define CPR correctly. Participants were asked to answer the following free-text question: “Do you have any ideas on why women may be less likely to receive CPR than men when they collapse in public?” Descriptive statistics were used to define the cohort. The free-text response was coded using open coding, and major themes were identified via classical content analysis.
RESULTS: In total, 548 subjects were surveyed. Mean age was 38.8 years, and 49.8% were female. Participants were geographically distributed as follows: 18.5% West, 9.2% Southwest, 22.0% Midwest, 27.5% Southeast, and 22.9% Northeast. After analysis, 3 major themes were detected for why the public perceives that women receive less bystander CPR. They include the following: (1) sexualization of women's bodies; (2) women are weak and frail and therefore prone to injury; and (3) misperceptions about women in acute medical distress. Overall, 41.9% (227) were trained in CPR while 4.4% reported having provided CPR in a medical emergency.
CONCLUSIONS: Members of the general public perceive fears about inappropriate touching, accusations of sexual assault, and fear of causing injury as inhibiting bystander CPR for women. Educational and policy efforts to address these perceptions may reduce the sex differences in the application of bystander CPR.
Olivier Abel conclut cet ouvrage en évoquant la double conception de la mort : l'une qui donne le choix de mourir, l'autre protégeant les plus vulnérables jusqu'au bout de la vie. Deux conceptions différentes qui incitent l'auteur à penser des occasions de paroles, "tout un va-et-vient- entre la parole des uns et des autres", et d'accepter durablement de "vivre avec" le problème.
BACKGROUND: The 38/2010 law has widened the supply of palliative care for patients with chronic and degenerative illness. Dementia is a chronic and debilitating illness and it requires specific, complex and constant assistance, involving the health professionals' community and family, and should also benefit from palliative care. But what do the caregivers of these patients think about it?
AIM: To explore the point of view of caregivers accompanying dementia patients regarding palliative care and the accompaniment of the medical team.
METHOD: A qualitative method with phenomenological approach: 29 semi-structured interviews have been submitted to caregivers of patients suffering from dementia. The interviews were submitted to analysis of thematic content.
RESULT: In the majority of cases the caregiver is a member of the family and holds this position because of the affective relationship he/she shares with the patient. They too live the illness of the relative as if it were theirs. The caregiver doesn't know about palliative care or has only heard of it, but is resistant to the application of this care, especially when its correct meaning and use are explained. At the same time, the health professionals'' role is important when it comes to taking decisions: caregivers rely completely on the team's competence and on their judgement.
CONCLUSION: A correct sharing of knowledge is fundamental. The healthcare professionals must be trained in palliative care in order to correctly inform caregivers and to avoid false beliefs about or resistance to the application of these useful pathways.
INTRODUCTION: While close collaboration between general practitioners (GPs) and hospital specialists is considered important, the sharing of care responsibilities between GPs and oncologists during palliative chemotherapy has not been clearly defined.
OBJECTIVE: Evaluate the opinions of GPs and oncologists about who should provide different aspects of care for patients receiving palliative chemotherapy.
DESIGN: We conducted semi-structured interviews using six hypothetical scenarios with purposively sampled GPs (n = 12) and oncologists (n = 10) in the Netherlands. Each represented an example of a clinical problem requiring different aspects of care: problems likely, or not, related to cancer or chemotherapy, need for decision support, and end-of-life care.
RESULTS: GPs and oncologists agreed that GPs should provide end-of-life care and that they should be involved in decisions about palliative chemotherapy; however, for the other scenarios most participants considered themselves the most appropriate provider of care. Themes that emerged regarding who would provide the best care for the patients in the different scenarios were expertise, continuity of care, accessibility of care, doctor-patient relationship, and communication. Most participants mentioned improved communication between the GP and oncologist as being essential for a better coordination and quality of care.
CONCLUSION: GPs and oncologists have different opinions about who should ideally provide different aspects of care during palliative chemotherapy. Findings raise awareness of the differences in reasoning and approaches and in current communication deficits between the two groups of health professionals. These findings could be used to improve coordination and collaboration and, ultimately, better patient care as results demonstrated that both disciplines can add value to the care for patients with advanced cancer. Key points This study identified contrasting opinions of GPs and oncologists about who should provide different aspects of care for patients receiving palliative chemotherapy. Important themes that emerged were expertise, continuity of care, doctor-patient relations, accessibility of care, and communication. Although frequently using the same arguments, GPs and oncologists often considered themselves to be the most appropriate providers of palliative care.
Purpose: To explore factors predicting neonatal nurses' attitude towards end-of-life decisions in neonates, and to describe the nurses' viewpoints on end-of-life decisions; barriers to end-of-life decision making; parents', nurses', and ethical committees' involvement in the process of end-of-life decision making; and who should regulate end-of-life decisions regarding neonates.
Design and Methods: A cross-sectional descriptive correlational design was applied. Sample included 279 neonatal nurses working in 24 neonatal intensive care units across Jordan. Data were collected using internationally-accepted questionnaires. Descriptive and inferential statistics were applied in data analysis.
Results: Most nurses perceived that everything possible should be done to ensure a neonate's survival, even when they suffer severe prognosis (80%) and irrespective of the burden of the child's disability on the family (75%). Almost all nurses (96%) were against administering drugs with the purpose of ending the neonate's life and 63% were against continuing current treatment without adding others. The nurses' perceived effect of end-of-life decisions on their everyday life, and the importance of religious values to the nurses' personal lives, significantly predicted pro-life attitude scores. According to 80% of the nurses, legal constraints were the most significant barriers to end-of-life decision making. The majority of nurses (84%) indicated that non-religious bodies should establish end-of-life regulations for neonates.
Conclusion: Generally, nurses' attitude was supportive of life saving decisions at end-of-life, regardless of the survival odds and the probable health outcomes of the neonates.
Practice Implications: Neonates' end-of-life care, and parents' bereavement care, should be standard practices in every NICU, worldwide.
OBJECTIVES: In 2015, the Province of Quebec, Canada passed a law that allowed voluntary active euthanasia (VAE). Palliative care stakeholders in Canada have been largely opposed to euthanasia, yet there is little research about their views. The research question guiding this study was the following: How do palliative care physicians in Quebec position themselves regarding the practice of VAE in the context of the new provincial legislation?
METHODS: We used interpretive description, an inductive methodology to answer research questions about clinical practice. A total of 18 palliative care physicians participated in semistructured interviews at two university-affiliated hospitals in Quebec.
RESULTS: Participants positioned themselves in opposition to euthanasia. Their justifications were framed within their professional commitment to not hasten death, which sat in tension with the value of patients' autonomy to choose how to die. Participants described VAE as unacceptable if it impeded opportunities to evaluate and alleviate suffering. Further, they contested government rhetoric that positioned VAE as a way to improve end-of-life care. Participants felt that VAE would diminish the potential of palliative care to relieve suffering. Dilemmas were apparent in their narratives, about reconciling respect for patient autonomy with broader palliative care values, and the value of accompanying and not abandoning patients who make requests for VAE while being committed to neither prolonging nor hastening death.
CONCLUSIONS: This study provides insight into nuanced positions of experienced palliative care physicians in Quebec and confirms expected tensions between an important stakeholder and the practice of VAE as guided by the new legislation.
OBJECTIVE: People's views regarding autopsy vary according to their cultural and religious beliefs. This paper aims to determine the opinions towards this procedure among Muslims resident in Libya and Muslims and non-Muslims resident in the UK. Our long-term goal is to improve autopsy rates; whether conventional or through the use of post-mortem imaging.
METHODS:: 400 questionnaires were distributed to the three communities, interrogating belief about post-mortem investigations. Descriptive statistics and non-parametric statistics were used to analyse the data.
RESULTS: Of the 400 distributed questionnaires, there was a high return rate of 320 (80%). All groups felt that children should be buried sooner than adults(p < 0.001), but 77% of Libyan Muslims thought that children should be buried within 12 h of death compared to 16% of UK Muslims and only 7% of UK non-Muslims (p < 0.001). More non-Muslims were unconcerned about a negative impact of traditional autopsy on the dignity of the corpse than Muslims (p < 0.001) and more Muslims responded that autopsy has a negative emotional effect on the family (p < 0.001). Type of death altered what sort of investigations were desired. In the case of homicide, Libyan Muslims were less likely to prefer CT (p < 0.001) or MRI (p = 0.001). Sex had no effect on the results of the survey.
CONCLUSION: Post-mortem imaging is acceptable to both Muslims and non-Muslims in Libya and the UK, but Muslims have a significant preference for post-mortem imaging compared to autopsy, except in homicidal cases.
ADVANCES IN KNOWLEDGE: (1) The ability of post-mortem imaging to preserve the dignity of the corpse is independent of religion, however, significantly more Muslims feel that autopsy has a negative emotional effect on the family of the deceased. (2) A significant majority of Muslims in Libya prefer to bury children within 12 h of death, while a delay of up to a week is acceptable in UK. (3) Muslims resident in UK have an attitude closer to that of the indigenous (non-Muslim) population and therefore, educational programmes may be successful in changing attitudes of Muslims in Libya and other predominantly Muslim countries.
Assisted dying is a highly controversial moral issue incorporating both physician-assisted dying (PAD) and voluntary active euthanasia. End-of-life practices are debated in many countries, with assisted dying receiving different consideration across various jurisdictions. In this paper, we provide an analytic framework of the current position and the main arguments related to the rights and moral principles concerning assisted dying. Assisted dying proponents focus on the respect of autonomy, self-determination and forestalling suffering. On the other hand, concerns are raised regarding the interpretation of the constitutional right to life and balancing this with the premise of assisted dying, alongside the impacts of assisted dying on the doctor-patient relationship, which is fundamentally based on trust, mutual respect and the premise of 'first do no harm'. Our review is underpinning the interpretation of constitutional rights and the Hippocratic Oath with the premise of assisted dying, alongside the impacts of assisted dying on the doctor-patient relationship. Most clinicians remain untrained in such decision making, with fears against crossing key ethical divides. Due to the increasing number of cases of assisted dying and lack of consensus, our review enables the integration of ethical and legal aspects and facilitates decision making.
OBJECTIVES: To compare the delivery of end of life care given to US Medicare beneficiaries in hospital by internal medicine physicians with Republican versus Democrat political affiliations.
DESIGN: Retrospective observational study.
SETTING: US Medicare.
PARTICIPANTS: Random sample of Medicare beneficiaries, who were admitted to hospital in 2008-12 with a general medical condition, and died in hospital or shortly thereafter.
MAIN OUTCOME MEASURES: Total inpatient spending, intensive care unit use, and intensive end of life treatments (eg, mechanical ventilation and gastrostomy tube insertion) among patients dying in hospital, and hospice referral among patients discharged but at high predicted risk of 30 day mortality after discharge. Physicians were categorized as Democrat, Republican, or non-donors, using federal political contribution data.
RESULTS: Among 1 480 808 patients, 93 976 (6.3%) were treated by 1523 Democratic physicians, 58 876 (4.0%) by 768 Republican physicians, and 1 327 956 (89.6%) by 23 627 non-donor physicians. Patient demographics and clinical characteristics were similar between groups. Democrat physicians were younger, more likely to be female, and more likely to have graduated from a top 20 US medical school than Republican physicians. Mean end of life spending, after adjustment for patient covariates and hospital specific fixed effects, was US$17 938 (£12 872; €14 612) among Democrat physicians (95% confidence interval $17 176 to $18 700) and $18 409 among Republican physicians ($17 362 to $19 456; adjusted Republican v Democrat difference, $472 (-$803 to $1747), P=0.47). Intensive end of life treatments for patients who died in hospital did not vary by physician political affiliation. The proportion of patients discharged from hospital to hospice did not vary with physician political affiliation. Among patients in the top 5% of predicted risk of death 30 days after hospital discharge, adjusted proportions of patients discharged to hospice were 15.8%, 15.0%, and 15.2% among Democrat, Republican, and non-donor physicians, respectively (adjusted difference in proportion between Republicans v Democrats, -0.8% (-2.7% to 0.9%), P=0.43).
CONCLUSIONS: This study provided no evidence that physician political affiliation is associated with the intensity of end of life care received by patients in hospital. Other treatments for politically polarised healthcare issues should be investigated.
La sédation continue, maintenue jusqu’au décès (SCMJD) a pour but de soulager une souffrance ressentie comme insupportable par le patient et réfractaire à tout traitement, par l’abolition totale de vigilance. Le patient sédaté est calme et détendu mais privé de ses moyens d’expression, et ce, jusqu’au décès. Est-ce suffisant pour dire qu’il ne souffre pas ? L’objectif de cette étude était d’explorer les opinions des professionnels de santé à propos de l’efficacité de la SCMJD contre les symptômes réfractaires.
Recherche qualitative internationale avec étude de cas multiples fondée sur les données existantes et l’entretien semi-directif individuel. Elle a été réalisée dans deux pays européens : en France et en Pologne.
Au total, 13 USP ont été incluses, 197 dossiers médicaux ont été étudiés et 60 entretiens réalisés auprès de médecins et d’infirmières ont été inclus et analysés. La SCMJD était mise en œuvre pour un symptôme dit physique réfractaire, alors qu’en réalité elle était instaurée pour une souffrance morale réfractaire. L’efficacité de ce traitement n’était pas absolue pour tous les professionnels de santé.
Le seul critère permettant de juger de l’efficacité ou non de la SCMJD était fondé sur des représentations subjectives des professionnels de santé interrogés et non sur des critères scientifiques objectifs. Les résultats de notre étude montrent que, d’après les professionnels de santé interrogés, il est impossible, à ce jour, d’être certain de l’efficacité de la SCMJD contre la souffrance réfractaire, ou de l’évaluer de façon objective et rigoureuse.