Understanding why patients request euthanasia when it is illegal: a qualitative study in palliative care units on the personal and practical impact of euthanasia requests

Context: Some patients in palliative care units request euthanasia regardless of legislation. Although studies have explored the reasons for these requests, little is known about the subjective, relational, and contextual repercussions for the patient. Objectives: The aim of this study is to understand the purpose of euthanasia requests from the patient’s viewpoint and their personal and practical impact. Methods: We conducted in-depth interviews with patients requesting euthanasia, their family members, and health care providers in 11 French palliative care units. A thematic analysis of the data was performed. Results: In total, 18 patients were interviewed within 48 h of the request being made; 1 week later, 9 patients were interviewed again. Five main themes emerged: assuming the possibility of transgressing the forbidden, a call for unbearable suffering to be recognized, encouragement to change clinical practice, reclaiming a sense of freedom over medical constraints, and imagining a desirable future for oneself. Conclusions: A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients’ sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.

A Cross-Sectional Study of Job Satisfaction and Intention to Leave Job in Palliative Care in Croatia

Purpose Stressful and demanding clinical situations may contribute to job dissatisfaction and may even contribute to an intention to leave the job among palliative care (PC) clinicians. Personal and organizational factors may influence the occupational well-being of PC clinicians as well. This study aimed to determine the predictive contribution of personal (communication skills, resilience, religiosity) and organizational (coworkers’ social support, job control) factors in the explanation of PC clinicians job (dis)satisfaction and their intention to leave their job. Methods The study was conducted on a convenience sample of 122 PC clinicians of different disciplines (nurses/technicians, physicians, psychologists, spiritual counsellors/priests, social workers, physical therapists, etc). The sample mainly consisted of nurses (57%). Hierarchical and logistic regression analyses of the results obtained were applied. Results This study indicates that 53% of PC clinicians are satisfied with their daily job and 76% do not intend to leave the job. The results showed no differences in job satisfaction and intention to leave between nurses/technicians and other PC clinicians. A significant negative correlation was found between job satisfaction and intention to leave the job. Communication skills, religiosity and coworkers’ social support, showed as significant predictors of job satisfaction. PC clinicians’ perception of their own difficulties in communicating bad news contributed significantly to job satisfaction and intention to leave the job in palliative care. Conclusion This study suggests that job satisfaction in a palliative care setting is determined by a larger number of personal and organizational factors than the intention to leave the job. Communication skills showed indispensable for providing quality care for dying patients. Skills in communicating bad news to dying patients and their families have emerged as particularly important for PC clinicians’ occupational well-being.

Implementation and evaluation of clinical supervision for support workers in a paediatric palliative care setting

Support workers represent a large proportion of the NHS workforce and yet their supervisory needs are often overlooked. This study focused specifically on a cohort of support workers in a community paediatric palliative care setting. Peer supervision was implemented for this group, initially face to face and then virtually. The experiences of clinical supervision for this group were investigated through responses to an online survey ( n = 25) and two focus groups ( n = 7). Survey data were analysed concurrently with a thematic analysis. The following themes and sub-themes were developed from transcribed focus groups: (1) Barriers to engagement (2) Being Listened to (3) What Worked Well: Logistics. Overall, delivery of supervision was effective to a mixed degree – though support workers appreciated a space to be listened to, their distrust of colleagues and other barriers impeded the capacity of supervision to achieve more than support and catharsis for this group. Future projects should focus on introducing more preliminary interventions to promote reflection and peer support for these groups as well as continue to consider the supervisory needs of support workers.

Evaluation of Diagnostic and Treatment Approaches to Acute Dyspnea in a Palliative Care Setting Among Medical Doctors with Different Educational Levels

BackgroundDyspnea is common in patients with advanced cancer. Diagnostic procedures in patients with dyspnea are mandatory but often time-consuming and hamper rapid treatment of the underlying refractory symptoms. Opioids are the first-line drugs for the treatment of refractory dyspnea in palliative care patients with advanced lung cancer.MethodsTo evaluate the knowledge levels of medical doctors with different educational levels on the diagnosis of and treatment options for dyspnea in patients with advanced lung cancer in a palliative care setting, a case report and survey was distributed to physicians at the University Hospital Krems, describing acute dyspnea in a 64-year-old stage IV lung cancer patient. A total of 18 diagnostic and 22 therapeutic options were included in the survey. The physicians were asked to suggest and rank in order of preference their diagnosis and treatment options. Statistical analyses of the data were performed, including comparison of the responses of the senior doctors and the physicians in training.ResultsA total of 106 surveys were completed. The respondents were 82 senior physicians and 24 physicians in training (response rates of 86% and 80%, respectively). Regarding diagnostic investigations, inspection and reading the patient’s chart were the most important diagnostic tools chosen by the respondents. The choices of performing blood gas analysis (p=0.01) and measurement of oxygen saturation (p=0.048) revealed a significant difference between the groups, both investigations performed more frequently by the physicians in training. As for non-pharmacological treatment options, providing psychological support was one of the most relevant options selected. A significant difference was seen in choosing the option of improving a patient’s position in relation to level of training (65.9% senior physicians vs. 30.4% physicians in training, p=0.04). Regarding pharmacological treatment options, oxygen application was the most chosen approach. The second most frequent drug chosen was a ß-2 agonist. Only 9.8% of the senior physicians and 8.7% of the physicians in training suggested oral opioids as a treatment option, whereas intravenous opioids were suggested by 43.9% of the senior physicians and 21.7% of the physicians in training (p=0.089). For subcutaneous application of opioids, the percentage of usage was significantly higher for the physicians in training than for the senior physicians (78.3% vs. 48.8%, p=0.017, respectively).ConclusionThe gold standard treatment for treating refractory dyspnea in patients with advanced lung cancer is opioids. Nevertheless, this pharmacological treatment option was not ranked as the most important. Discussing hypothetical cases of patients with advanced lung cancer and refractory dyspnea with experienced doctors as well as doctors at the beginning of their training may help improve symptom control for these patients.

End-of-life Comfort Evaluation, is Clinic Enough? A Retrospective Cohort Study of Combined Comfort Evaluation with Analgesia/Nociception Index and Clinic in non-Communicative Patients

Background: Comfort evaluation is one of the major challenges in the palliative care setting, particularly when it comes to non-communicative patients. For this specific population, validated tools for comfort evaluation are scarce and healthcare professionals have to rely on their clinical sense and experience. Objectives: To provide arguments for the use of Analgesia/Nociception Index (ANI) monitoring in order to improve clinical comfort evaluation. Methods: We conducted a retrospective cohort study of non-communicative patients at the end of their lives whose comfort was evaluated clinically and with ANI. We focused on the coherence or discordance of clinical and ANI evaluations and on pharmacological interventions driven by them. Results: 58 evaluations from 33 patients were analyzed. Clinical and demographic characteristics were highly variable. Simultaneous clinical and ANI evaluations were concordant in 45 measurements (77.58%), leading mostly to no treatment modification when indicating comfort and to increasing anxiolytic or pain-relief treatments when indicating discomfort. Thirteen (22.41%) evaluations were discordant, leading mostly to treatment incrementation. Conclusion: We suggest that the ANI monitor is a reliable tool in the palliative setting and may help provide patients with the best symptom relief and the most appropriate therapeutics.

Refractory hyperactive delirium in the dying: pharmacological management

BackgroundDelirium is a prevalent clinical presentation in advanced illness. The hyperactive phase can cause severe symptoms at the end of life. There is no published study of the pharmacological management of this symptom in Australian palliative medicine practice.ObjectivesTo describe the pharmacological management of hyperactive delirium at the end of life in an Australian inpatient palliative care setting.MethodsRetrospective audit of deaths from October 2019 where a medication of interest (MOI) was used following admission to the palliative care unit (PCU) of Eastern Health. The clinical notes of those included were reviewed to further describe the clinical details surrounding the use of the MOI.ResultsForty patients were included. Midazolam was the most common medication used (57.5%). The most common dual agent combination was midazolam plus levomepromazine.ConclusionsThis audit is the first description of pharmacological management of severe hyperactive delirium at the end of life requiring sedation in an Australian PCU.

How did Music Therapy Contribute to Patients’ Quality of Life in a Hospice and Palliative Care Setting?

<p>This qualitative research explores how I, as a student music therapist, contributed to patients’ quality of life (QoL) in a hospice and palliative care setting. The study principally focuses on the different music therapy and personal approaches that I used and which seemed to contribute to patients’ QoL. The research was carried out at a hospice in New Zealand and I had sessions with in-patients, day hospice patients and out-patients who were all at varying stages of illness. In this research, secondary analysis of data is used to answer my research question. The data used in this study are the clinical notes and reflexive journals that I gathered while working with 67 patients in a total of 194 sessions. Because QoL is a broad complex concept, I have chosen to use a conceptual framework suggested by music therapy theorist Even Ruud (1997) to put a structure to answering my research question. In thematic analysis, the data were both deductively and inductively analysed. The findings describe music therapy methods, activities, strategies and techniques as well as personal approaches I employed which seemed to promote a sense of affective awareness, agency, belonging and meaning, and coherence of life in patients receiving hospice and palliative care. This study indicated that Ruud’s (1997) framework has particular meaning in the context of hospice palliative care and that the framework could be extended for use in hospice and palliative care. The clinical vignette further provide an exploratory view of the use of music therapy techniques and the quality of relationships, and how both of these contributed to increasing a patient’s QoL. In the discussion, the findings are further explained in the light of other studies. In particular, ‘being with’ patients underpinned all of the musical and personal approaches that I made in working with hospice patients and this is evaluated as an overarching point. Although Ruud’s (1997) idea of QoL was a good fit in my study, the study may suggests how his model could address ways in which affective awareness, agency, belonging and meaning and coherence of life can be supported with various music and personal approaches in the context of music therapy in hospice and palliative care settings.</p>

How did Music Therapy Contribute to Patients’ Quality of Life in a Hospice and Palliative Care Setting?

<p>This qualitative research explores how I, as a student music therapist, contributed to patients’ quality of life (QoL) in a hospice and palliative care setting. The study principally focuses on the different music therapy and personal approaches that I used and which seemed to contribute to patients’ QoL. The research was carried out at a hospice in New Zealand and I had sessions with in-patients, day hospice patients and out-patients who were all at varying stages of illness. In this research, secondary analysis of data is used to answer my research question. The data used in this study are the clinical notes and reflexive journals that I gathered while working with 67 patients in a total of 194 sessions. Because QoL is a broad complex concept, I have chosen to use a conceptual framework suggested by music therapy theorist Even Ruud (1997) to put a structure to answering my research question. In thematic analysis, the data were both deductively and inductively analysed. The findings describe music therapy methods, activities, strategies and techniques as well as personal approaches I employed which seemed to promote a sense of affective awareness, agency, belonging and meaning, and coherence of life in patients receiving hospice and palliative care. This study indicated that Ruud’s (1997) framework has particular meaning in the context of hospice palliative care and that the framework could be extended for use in hospice and palliative care. The clinical vignette further provide an exploratory view of the use of music therapy techniques and the quality of relationships, and how both of these contributed to increasing a patient’s QoL. In the discussion, the findings are further explained in the light of other studies. In particular, ‘being with’ patients underpinned all of the musical and personal approaches that I made in working with hospice patients and this is evaluated as an overarching point. Although Ruud’s (1997) idea of QoL was a good fit in my study, the study may suggests how his model could address ways in which affective awareness, agency, belonging and meaning and coherence of life can be supported with various music and personal approaches in the context of music therapy in hospice and palliative care settings.</p>

Within the Circle of Care: the Patient's Lived Experience of Receiving Palliative Care

<p>I am a Registered Comprehensive Nurse with dual practice interests in the care of terminally ill people, and in quality improvement. This research study originates from my experience of working in a hospice as a clinical nurse then as a quality improvement co-ordinator in the early 1990s. At this time, quality improvement in the health services was relatively new, and there was no locally published research on quality improvement in palliative care. World wide there was a developing body of palliative care quality improvement literature (Higginson 1989, 1993, 1995); however there had been little research undertaken which reflected the patients' perception of the palliative care experience. As a result of my work experience came the quest to find out directly from patients, the aspects of care which they considered valuable. I chose to use the descriptive-phenomenological methodology particularly utilising van Manen's (1990) phenomenological method. This methodology allows the participants' experience to stand apart from existing health professional defined palliative care knowledge, yet provides a way for this participant knowledge to complement and augment it. This descriptive-phenomenological study describes six persons' experience of care within a palliative care setting, and discusses the possible significance that this may have for the practice of palliative care. The participants had at least two care experiences within this setting and were interviewed on one occasion shortly after their discharge, within their own homes. I invited the participants to talk about their care experiences. The anecdotes which the participants relayed, when reflected on, revealed both a pattern of storytelling as well as individual components of care. These components or elements of the care experience as well as informing each other, created a representation, a schematic description of their experience. The representation 'The circle of care', is orientated around the central component of 'identity', with the encircling valued components of care being: 'keeping control', 'being safe', 'chosen isolation', 'mortality awareness', 'relaxation and relinquishment', 'caring qualities', 'being watched' and 'humour'. The circle of 'palliative care philosophy' contained these components, finally being enclosed by an outer circle of the 'spiritual\aesthetic qualities of the environment of care'. The reality of people receiving palliative care is characterised by a number of supportive traditional and non-traditional aspects of caring. Although some characteristics have been described within general health and palliative care literature, some appear to have been generated by these particular participants as part their reality. The selected methodological approach and results limit the study to the context in which it was conducted. However the study suggests that patients are valued informants, and that they are able to augment existing palliative care knowledge. Ideally their input should be sought within the current systems of evaluating existing care and in the creation of new models of care.</p>