[Is individualized education for a medical students desirable? A common policy on how to handle medical students requests for individual adaptations is needed]. / Bör individualiserad utbildning för läkarstudenter eftersträvas?

In Sweden, freedom of conscience for health care professionals is not legally permitted. However, requests from medical students to adjust and/or skip compulsory learning activities because of their religious and moral convictions appear to get more abundant. This creates problems when learning activities are directly related to the examination objectives stated by the Higher Education Ordinance of Sweden. Allowing students to abstain from certain parts of the medical program raises difficulties as to what kind of convictions that should be accepted and to what degree. Questions arise regarding equality of learning opportunities, assessment, and reasonable resource allocation. We call for national debate regarding these issues, which different universities now are forced to handle on their own, with the aim of establishing a common approach.

Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care-A qualitative study.

AIMS: To describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units. DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. METHODS: Data were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR). RESULTS: Two main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals. CONCLUSION: Thirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: In palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life. REPORTING METHOD: The study was guided by the SRQR. WHAT DOES THIS ARTICLE CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.

Thirst or dry mouth in dying patients?-A qualitative study of palliative care physicians' experiences.

INTRODUCTION: Thirst and dry mouth are common symptoms among patients at the end of life. In palliative care today, there is a focus on mouth care to alleviate thirst. There are no qualitative studies on thirst from a physician's experience, which is why this study is needed. PURPOSE: This study aimed to explore palliative care physicians' experiences and views of thirst in patients at the end of life. METHODS: A qualitative interview study with an inductive approach was carried out. Sixteen physicians working in specialised palliative care units in Sweden were included. The interviews were analysed with a reflexive thematic analysis. RESULTS: The analysis resulted in three basic assumptions regarding thirst: It is dry mouth, not thirst; patients are dry in their mouth and thirsty; and, I do not know if they are thirsty. Further, four different themes regarding how to relieve thirst appeared: drips will not help thirst but cause harm; the body takes care of thirst itself; drips might help thirst; and, mouth care to relieve thirst or dry mouth. CONCLUSIONS: The palliative care physicians had different experiences regarding thirst, from thirst never arising, to a lack of awareness. They thought good mouth care worked well to alleviate the feeling of thirst and dry mouth. Most physicians did not want to give patients drips, while some did. This study indicates that there are many unanswered questions when it comes to thirst at end-of-life and that further research is needed.

Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians.

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients. METHODS: A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. CONCLUSIONS: All physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

Symptom clusters in palliative-stage cancer correlate with proinflammatory cytokine cluster.

BACKGROUND: Patients with palliative-stage cancer often suffer from a variety of debilitating symptoms which have been shown to appear in clusters. It is suggested that cytokines cause many such symptoms, and elevated cytokine production has been shown to correlate with symptoms. However, symptom clusters have not been thoroughly analyzed in relation to cytokine clusters. The aim of the present study was to identify symptom clusters and cytokine clusters in Swedish cancer patients, and to investigate correlations between the identified symptom clusters and cytokine clusters. METHODS: The EORTC Quality of Life Questionnaire Core 15 Palliative Care questionnaire was completed by 110 cancer patients, with blood samples taken at two time points four weeks apart. Meso scale discovery (MSD) assays were used to analyze 23 cytokines. Statistical analysis was performed using principal component analysis (PCA) of symptoms and cytokines, followed by correlation analysis of the obtained clusters. RESULTS: Three symptom clusters were identified: (I) pain-sleep disorder, (II) gastro-intestinal-fatigue, (III) physical functioning. The cytokines were divided into three clusters that can be characterized as (I) pro-tumorigenic, (II) cell-mediated immune response and (III) proinflammatory. At the second time point, a fourth cytokine cluster was isolated (IV) immunostimulation. Correlations were found at both time points between the proinflammatory cytokine cluster and the physical functioning symptom cluster, and at the week four time point between the proinflammatory cytokine cluster and the gastro-intestinal-fatigue symptom cluster. CONCLUSIONS: We show a correlation between symptom clusters and the proinflammatory cytokine cluster. Proinflammatory cytokines are known to cause symptoms that resemble palliative cancer symptoms. Increased knowledge of biochemical processes and their effect on patients' wellbeing may give clues for counteracting symptoms that affect quality of life (QOL) in palliative cancer care.

Exploring what is reasonable: uncovering moral reasoning of vascular surgeons in daily practice.

BACKGROUND: Vascular surgery offers a range of treatments to relieve pain and ulcerations, and to prevent sudden death by rupture of blood vessels. The surgical procedures involve risk of injury and harm, which increases with age and frailty leading to complex decision-making processes that raise ethical questions. However, how vascular surgeons negotiate these questions is scarcely studied. The aim was therefore to explore vascular surgeons' moral reasoning of what ought to be done for the patient. METHODS: Qualitative, semi-structured interviews were conducted with 19 vascular surgeons working at three Swedish university hospitals. Data were analysed according to systematic text condensation. RESULTS: The surgeons' moral reasoning about what ought to be done comprised a quest to relieve suffering and avoid harm by exploring what is reasonable to do for the patient. Exploring reasonableness included to shift one´s perspective from the vessels to the whole person, to balance patient's conflicting needs and to place responsibility for right decision on one´s shoulders. The shift from blood vessels to the whole person implied gaining holistic knowledge in pondering of what is best, struggling with one´s authority for surgery through dialogue, and building relationship for mutual security. To balance patient's conflicting needs implied weighing the patient's independence and a sense of being whole against ease of suffering, respecting the patient's will against protecting life and well-being, and weighing longer life against protecting the present well-being. Finally, to place responsibility on one´s shoulders was conveyed as an urge to remind oneself of the risk of complications, withholding one's power of proficiency, and managing time during the illness course. CONCLUSIONS: This study contributes to uncovering how moral reasoning is embodied in the vascular surgeons' everyday clinical discourse as a tangible part of their patient care. The results underpin the significance of moral considerations in the assemblage of medical knowledge and technical skills to further understand vascular surgeons' clinical practice. The clinical application of these results is the need of forums with sufficient possibilities for articulating these important moral considerations in everyday care.

Prevalence, content and significance of advance care planning in nursing home patients.

OBJECTIVE: Studies on advance care planning in nursing homes are rare, and despite their demonstrated favourable effects on end-of-life care, advance care plans are often lacking. Therefore, we wished to explore: (i) the prevalence of advance care plans in a Swedish nursing home setting using two different definitions, (ii) the content of advance care plans, (iii) adherence to the content of care plans and (iv) possible associations between the presence of advance care planning and background characteristics, physician attendance and end-of-life care. DESIGN: Retrospective chart review. SETTING: Twenty-two nursing homes in Sweden. SUBJECTS: A total of 367 deceased patients (included between 1 June 2018 and 23 May 2020) who had lived in nursing homes. MAIN OUTCOME MEASURES: Electronic health record data on the prevalence of advance care plans with two different definitions and variables regarding background characteristics, physician attendance and end-of-life care, were collected. RESULTS: Of the study population, 97% had a limited care plan (ACP I) documented. When using the comprehensive definition (ACP II), also including patient's preferences and involvement of family members in advance care planning, the prevalence was 77%. Patients with dementia more often had care plans, and a higher physician attendance was associated with presence of advance care plans. Prescription of palliative drugs and information to family members of the patient's deterioration and impending death were more common in patients with care plans compared to those where such plans were missing. There was adherence to the care plan content. CONCLUSION: In contrast to previous research, this study showed a high prevalence of advance care plans in nursing home patients. Patients with care plans more frequently received prescriptions of palliative drugs and their family members were informed to a greater extent about the patient's deterioration and impending death compared to those without care plans. These aspects are often seen as vital components of good palliative care.Key pointsStudies on advance care planning in nursing homes are rare, and despite their demonstrated positive effects on end-of-life care, advance care plans are often lacking.The present study revealed a high prevalence of advance care plans (77-97% depending on definition) in nursing home patients.Patients with dementia more often had advance care plans, and a higher physician attendance was associated with presence of care plans.Advance care plans were positively associated with components of good palliative care, such as prescriptions of palliative drugs and information to family.

"Do I want to know it all?" A qualitative study of glioma patients' perspectives on receiving information about their diagnosis and prognosis.

PURPOSE: Glioma patients have poor prognosis. The amount of detail of disease-related information patients wish to receive is not known. The aim of this study was to explore glioma patients' experiences and preferences regarding receiving information on diagnosis and prognosis. METHODS: Semi-structured interviews were performed with patients diagnosed with glioma. The interviews were analysed by qualitative content analysis without predefined categories by two independent coders. RESULTS: Ten women and 15 men, with newly diagnosed grade II-IV glioma, age 25-76 years, were interviewed. Participants' experience on diagnosis communication was either indirect, meaning they found out their diagnosis unintentionally, e.g., from their electronic health record (EHR) instead of from their doctor, this causing anxiety and feelings of abandonment, insufficiently tailored: lacking in many aspects or individualised and compassionate. Participants generally wanted to know "the truth" about diagnosis and prognosis, but what they meant varied; some desired full honest information to allow for autonomous choices, others preferred general information without details, and some wanted no bad news at all, only positive information. Participants disclosed vulnerability after receiving their diagnosis, being cast into the unknown. They expressed a need for better everyday practical information to help create some control. Supportive staff could reduce participants' distress. CONCLUSION: There is a need to further develop and implement individually tailored information to glioma patients, both in consultations and patient-accessed EHR systems, which should have safe guards for sensitive information. Not all patients want to know it all, one size does not fit all.

Elephant in the room - Family members´ perspectives on advance care planning.

OBJECTIVE: To explore family members' experiences of advance care planning in nursing homes. DESIGN: Individual interviews. Thematic analysis. SETTING: Four nursing homes in Sweden. SUBJECTS: Eighteen family members of deceased nursing home patients. MAIN OUTCOME MEASURES: Family members' experiences of advance care planning in nursing homes. RESULTS: Family members' experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient's preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient's wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician's absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions. CONCLUSION: Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient's wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning. Key points Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members' feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.

'We have no crystal ball' - advance care planning at nursing homes from the perspective of nurses and physicians.

Objective: To investigate clinicians' perspectives on the factors that shape the process of advance care planning in a nursing home context. Design: Interviews. Latent qualitative content analysis. Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes. Main outcome measures: Participants' views on advance care planning (ACP) at nursing homes. Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patient's readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patient's preferences and staff's and family member's views; Decision & documentation of the ACP, e.g. clear documentation in patient's medical records that are up-to-date and available for staff caring for the patient, and Implementation & re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence - defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context. Key Points Advance care planning can help patients to receive care in line with their preferences and can positively impact quality of end-of-life care. Our results describe a process consisting of four manifest categories and one latent theme constituting the process of advance care planning, that may be considered in education in advance care planning. The significance of nurses and physicians perceiving beneficence as well as fear of accusations of maleficence are important factors to contemplate. The study has implications for healthcare staff caring for patients near the end of their lives, in particular patients in nursing homes.

A good death from the perspective of palliative cancer patients.

PURPOSE: Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden. METHODS: Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis. RESULTS: Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants' views of a good death. CONCLUSIONS: Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients' personal experience of death and dying can help address their fears as death approaches.

Suffering and euthanasia: a qualitative study of dying cancer patients' perspectives.

PURPOSE: Although intolerable suffering is a core concept used to justify euthanasia, little is known about dying cancer patients' own interpretations and conclusions of suffering in relation to euthanasia. METHODS: Sixty-six patients with cancer in a palliative phase were selected through maximum-variation sampling, and in-depth interviews were conducted on suffering and euthanasia. The interviews were analyzed using qualitative content analysis with no predetermined categories. RESULTS: The analysis demonstrated patients' different perspectives on suffering in connection to their attitude to euthanasia. Those advocating euthanasia, though not for themselves at the time of the study, did so due to (1) perceptions of suffering as meaningless, (2) anticipatory fears of losses and multi-dimensional suffering, or (3) doubts over the possibility of receiving help to alleviate suffering. Those opposing euthanasia did so due to (1) perceptions of life, despite suffering, as being meaningful, (2) trust in bodily or psychological adaptation to reduce suffering, a phenomenon personally experienced by informants, and (3) by placing trust in the provision of help and support by healthcare services to reduce future suffering. CONCLUSIONS: Dying cancer patients draw varying conclusions from suffering: suffering can, but does not necessarily, lead to advocations of euthanasia. Patients experiencing meaning and trust, and who find strategies to handle suffering, oppose euthanasia. In contrast, patients with anticipatory fears of multi-dimensional meaningless suffering and with lack of belief in the continuing availability of help, advocate euthanasia. This indicates a need for healthcare staff to address issues of trust, meaning, and anticipatory fears.

Dying cancer patients' own opinions on euthanasia: an expression of autonomy? A qualitative study.

INTRODUCTION: Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. METHOD: Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. RESULTS: The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust. CONCLUSIONS: Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.

Attitudes toward euthanasia among Swedish medical students.

Attitudes toward euthanasia differ between individuals and populations, and in many studies the medical profession is more reluctant than the general public. Our goal was to explore medical students' attitude toward euthanasia. A questionnaire containing open-ended questions was answered anonymously by 165 first- and fifth-year medical students. Data were analysed using qualitative content analysis with no predetermined categories. The students' arguments opposing euthanasia were based on opinions of 1. euthanasia being morally wrong, 2. fear of possible negative effects on society, 3. euthanasia causing strain on physicians and 4. doubts about the true meaning of requests of euthanasia from patients. Arguments supporting euthanasia were based on 1. patients' autonomy and 2. the relief of suffering, which could be caused by severe illnesses, reduced integrity, hopelessness, social factors and old age. There are several contradictions in the students' arguments and the results indicate a possible need for education focusing on the possibility of symptom control in palliative care and patients' perceived quality of life.

Dying with dignity according to Swedish medical students.

GOAL OF WORK: To die with dignity is an important but ambiguous concept, and it is used in contradictory contexts, both for the promotion of palliative care and as an argument for euthanasia. Our goal was to explore medical students' definition of a dignified death. PATIENTS AND METHODS: A questionnaire containing open-ended questions was answered anonymously by 165 first- and fifth-year medical students. The data were analysed using qualitative content analysis with no predetermined categories. MAIN RESULTS: The students' descriptions of a dignified death resulted in five categories of death: (1) without suffering, (2) with limited medical interventions, (3) with a sense of security, which implied a safe environment nursed by professional staff, (4) with autonomy, respect for the individual and empowerment to the patient and (5) with acceptance. These findings show similarity to the established concepts of a good death, as well as the view of a dignified death by terminally ill patients. CONCLUSIONS: The data suggest that the students perceive that the medical system is over-treating patients and sometimes causing harm to dying patients. The results reveal a potential misunderstanding and contradiction relating to death without suffering and the use of necessary palliative interventions. These findings are important when planning education as regards palliative care and dignified death.