To use data from a national quality register to investigate if there are differences relating to migrant background in the quality of end-of-life care of patients dying in Sweden.

A retrospective, comparative register-based study. In total, 81,418 deceased patients, over 18 years of age, registered in the Swedish Register of Palliative Care during 2017 and 2018, of expected death were included in the study. Of these, 72,012 were Swedish-born and 9,395 were foreign-born. Descriptive and analytical statistical methods were used.

No general pattern of differences in quality regarding end-of-life care was found between Swedish- and foreign-born patients. There were several significant differences in various quality indicators but not in a specific direction. Sometimes, the quality indicators showed an advantage for Swedish-born patients but just as often, they were also favorable for foreign-born patients. Swedish-born patients had greater access to specialized palliative care than foreign-born patients. Foreign-born patients were more often cared for in general home care setting, despite a higher frequency of cancer diagnosis.

Foreign-born patients were less likely to be cared for in specialized palliative care units and had poorer access to palliative care teams than Swedish-born patients, despite having a higher proportion of cancer diagnoses. However, no general pattern was found indicating that foreign-born patients were disadvantaged in the quality indicators measured in the present study. Perhaps, this is an indication that the palliative care in Sweden is individualized; nonetheless, the quality of end-of-life care would be higher if dying patients, regardless of country of birth, have better access to specialized palliative care.

Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.

Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down “as he may not wake up.” He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, “Why is it taking so long to die?.” She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.

Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.

This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer’s and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed.

The sample consists of 129 participants who care for a family member with Alzheimer’s and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out.

The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden.

The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.

Advance care planning (ACP) conversations require the consideration of deeply held personal values and beliefs and the discussion of uncertainty, fears, and hopes related to current and future personal healthcare. However, empirical data are limited on how such spiritual concerns and needs are supported during ACP. This study explored board-certified healthcare chaplains’ perspectives of patients’ spiritual needs and support in ACP conversations.

An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey included 3 open-ended questions about patients’ hopes and fears and about how the chaplains addressed them during ACP conversations. Written qualitative responses provided by 244 of the chaplains were examined with content analysis.

The majority of the 244 chaplains were White (83.6%), female (59%), Protestant (63.1%), and designated to one or more special care units (89.8%). Major themes on patients’ hopes and fears expressed during ACP were (1) spiritual, religious, and existential questions; (2) suffering, peace, and comfort; (3) focus on the present; (4) hopes and fears for family; and (5) doubt and distrust. Major themes on how chaplains addressed them were (1) active listening to explore and normalize fears, worries, and doubts; (2) conversations to integrate faith, values, and preferences into ACP; and (3) education, empowerment, and advocacy.

ACP conversations require deep listening and engagement to address patients’ spiritual needs and concerns – an essential dimension of engaging in whole-person care – and should be delivered with an interdisciplinary approach to fulfill the intended purpose of ACP.

Family caregivers play a vital role in care for people with serious illness. Reliable population-level information on family caregiving is scarce. We describe the socio-demographic and family caregiving characteristics and experiences of family caregivers of people with serious illness in the adult population.

We performed a secondary analysis of the cross-sectional population-based 19th Social-Cultural Changes survey. A random sample of 2,581 Dutch-speaking people aged 18–95, living in Flanders or Brussels, were contacted for participation in the survey between March and July 2014 using a stratified two-step sample. Differences between groups are described using Pearson chi-square tests and analysis of variance.

Response rate was 58.7% (1,515/2,581). Over a 12-month period, 7.6% of respondents provided family care for someone with a serious illness (n = 114). They were most often aged 55–74 (36.0%), women (57.9%), worked full-time (42.3%); 31.8% provided at least 10 h of family care each week. Family caregivers of people with serious illness, compared with family caregivers of people with other conditions, provided more medical and nursing care (33.3% vs. 22.5%, p = 0.027), and experienced a higher burden of family caregiving (p = 0.038) but a similarly high meaningfulness of family caregiving.

A considerable part of the adult working population provides family care for someone with serious illness. While family caregiving for someone with serious illness shows similarities with family caregiving for people with other conditions in terms of caregiver characteristics and the impact of caregiving on work-life balance and the meaning derived from it, it is also associated with increased burden.

Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers’ burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer.

This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates.

Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers’ spirituality on the relationship between depression and caregiver burden over time (b = −1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support.

Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients’ health.

Individuals with advanced cancer face the challenge of living meaningfully while also preparing for end of life. The ability to sustain this duality, called “double awareness,” may reflect optimal psychological adaptation, but no psychometric scale exists to measure this construct.

The purpose of this study was to develop a novel scale to measure double awareness in patients living with advanced cancer.

Guided by best practices for scale development, this study addresses the first three of nine steps in instrument development, including domain clarification and item generation, establishment of content validity of the items, and pre-testing of the items with patients.

Instrument development resulted in a 41-item measure with two dimensions titled “life engagement” and “death contemplation.” Items retained in the measure displayed face validity and were found to be both acceptable by patients and relevant to their lived experience.

The results of this scale development study will allow for full validation of the measure and future use in clinical and research settings. This novel measure of double awareness will have clinical utility and relevance in a variety of settings where patients with advanced cancer are treated.

From case reports, haloperidol administration has been associated with QTc prolongation, torsades de pointes, and sudden cardiac death. In a vulnerable population of critically ill patients after cardiac surgery, however, it is unclear whether haloperidol administration affects the QTc interval. Thus, the aim of this study is to explore the effect of haloperidol in low doses on this interval.

This retrospective cohort study was performed on a cardio-surgical intensive care unit (ICU), screened 2,216 patients and eventually included 68 patients with delirium managed with oral and intravenous haloperidol. In this retrospective analysis, electrocardiograms were taken prior and within 24 h after haloperidol administration. The effect of haloperidol on QTc was determined with a Person correlation, and inter-group differences were measured with new long QT comparisons.

In total, 68 patients were included, the median age was 71 (64–79) years and predominantly male (77%). Haloperidol administration followed ICU admission by three days and the cumulative dose was 4 (2–9) mg. As a result, haloperidol administration did not affect the QTc (r = 0.144, p = 0.23). In total, 31% (21/68 patients) had a long QT before and 27.9% (19/68 patients) after haloperidol administration. Only 12% (8/68 patients) developed a newly onset long QT. These patients were not different in the route of administration, cumulative haloperidol doses, comorbidities, laboratory findings, or medications.

These results indicated that low-dose intravenous haloperidol was safe and not clinically relevant for the development of a newly onset long QT syndrome or adverse outcomes and support recent findings inside and outside the ICU setting.

In seriously ill cardiac patients, several psychotherapy efficacy studies demonstrate little to no reduction in depression or improvement in quality of life, and little is known about how to improve psychotherapies to best address the range of patient needs. An interpersonal and behavioral activation psychotherapy was a key component of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) multisite randomized clinical trial. Although depressive symptoms did improve in the CASA trial, questions remain about how best to tailor psychotherapies to the needs of seriously ill patient populations. The study objective was to describe psychosocial needs emerging during a clinical trial of a palliative care and interpersonal and behavioral activation psychotherapy intervention that were not specifically addressed by the psychotherapy.

During the CASA trial, patient needs were prospectively tracked by the psychotherapist in each visit note using an a priori code list. Preplanned analysis of study data using directed content analysis was conducted analyzing the a priori code list, which were collapsed by team consensus into larger themes. The frequency of each code and theme were calculated into a percentage of visits.

A total of 150 patients received one or more visits from the therapist and were included in the analysis. Participants screened positive for depressive disorder (47%), had poor heart failure-specific health status (mean Kansas City Cardiomyopathy Questionnaire score = 48.6; SD = 17.4), and multiple comorbidities (median 4.3). Common needs that emerged during the therapy included difficulty coping with fatigue (48%), pain (28%), and satisfaction issues with medical care (43%). The following broader themes emerged: social support (77% of sessions), unmet symptom needs (67%), healthcare navigation (48%), housing, legal, safety, and transportation (32%), and end of life (12%).

Coping with chronic symptoms and case management needs commonly emerged during psychotherapy visits. Future psychotherapy interventions in seriously ill populations should consider the importance of coping with chronic symptoms and case management.

One of the side effects of opioid administration is opioid-induced constipation (OIC). To address this side effect, the oral peripheral μ opioid receptor antagonist naldemedine was developed. As this drug does not cross the blood–brain barrier, it is thought that it does not lead to opioid withdrawal syndrome (OWS) with central nervous system symptoms.

Here, we report a cancer patient who presented with symptoms centered round anxiety and irritation 4 months after administration of naldemedine for OIC and who was diagnosed with OWS after close investigation.

The patient was a 65-year-old female who had surgery for stage IB endometrial cancer 4 years previously, but experienced recurrence involving the pelvis 2 years later. Medical narcotics were used to control pain, but naldemedine was started to control subsequent constipation. When naldemedine-related OWS was suspected and the administration of naldemedine discontinued, the above symptoms disappeared within two days, and no recurrence was observed thereafter.

For patients receiving naldemedine, it is necessary to consider the possibility of OWS regardless of the period of administration in order to maintain patient quality of life.

The purpose of this study is to identify psychiatric disorders and stress factors experienced by staff members in cancer hospitals who were referred to psychiatric consultation service, and to investigate the association between psychiatric disorders and stress factors.

A retrospective descriptive study using clinical practice data on staff members referred to psychiatric consultation service, obtained for 8 years, was conducted at two National Cancer Center Hospitals in Japan. Psychiatric disorders were identified according to DSM-IV. Stress factors were extracted from a chief complaint at the initial visit in medical charts, using a coding approach, and grouped as job stress or personal stress. The frequencies of the stress factors were determined by two coders who were unaware of the categorized procedure. Fisher's exact test was used to determine the association between psychiatric disorders and stress factors.

Of 8077 psychiatric consultations, 65 (1%) staff members were referred. The most common psychiatric disorder was adjustment disorder (n = 26, 40%), followed by major depression (n = 17, 26%). Eight stress factors were identified from 76 meaning units and were grouped into five job stresses and three personal stresses. Of the five job stresses, four were most frequently experienced in adjustment disorders, and “failure to adapt to job environmental change” was significantly associated (p = 0.014). Two of the three personal stresses were most frequently experienced in psychiatric disorders other than major depressive disorder and adjustment disorders, and “suffering from mental disease” was significantly associated (p = 0.001).

We found that very few staff members were provided with psychiatric consultation service. A comprehensive support system for job stress might be needed to prevent adjustment disorders, as those are suggested to be the most common psychiatric disorders among staff members in cancer hospitals.

Findings show that there is a certain degree of refusal on the part of breast cancer patients to undergo adjuvant therapy. Accordingly, the major goals of the study were, first, to learn more about the beliefs of breast cancer patients in regard to adjuvant therapy; second, to find out about the sources of the patients’ beliefs; and third, to learn about the attitudes of oncologists concerning the same aspects of adjuvant therapy to which the patients’ beliefs referred.

The participants were 92 breast cancer patients (mean age 61.2) and 57 doctors of both genders specialized in oncology or affiliated domains. Both groups were administered questionnaires referring to goals of adjuvant treatment, the chances of attaining these goals, side effects, and difficulty of the treatment. Doctors were specifically asked about the views they thought proper to communicate to patients in regard to the mentioned issues. Patients were also asked about whether they had doubts about the treatment and sources of information.

The findings showed disparities between the views of patients and doctors in regard to goals, chances of attainment, side effects, and difficulty of treatment. Patients endorsed more goals than doctors and tended to assign to them lower chances of attainment. Doctors were divided in their views about whether to communicate the side effects and difficulties.

The results reveal the importance of outlining goals for patients undergoing adjuvant treatment and the disagreements between doctors about what should be communicated to patients, and highlight the complexity of providing to patients information that is both scientifically correct and emotionally helpful.

In the intensive care setting, delirium is a common occurrence; however, the impact of the level of alertness has never been evaluated. Therefore, this study aimed to assess the delirium characteristics in the drowsy, as well as the alert and calm patient.

In this prospective cohort study, 225 intensive care patients with Richmond Agitation and Sedation Scale (RASS) scores of −1 — drowsy and 0 — alert and calm were evaluated with the Delirium Rating Scale-Revised-1998 (DRS-R-98) and the Diagnostic and Statistical Manual 4th edition text revision (DSM-IV-TR)-determined diagnosis of delirium.

In total, 85 drowsy and 140 alert and calm patients were included. Crucial items for the correct identification of delirium were sleep–wake cycle disturbances, language abnormalities, thought process alterations, psychomotor retardation, disorientation, inattention, short- and long-term memory, as well as visuo-spatial impairment, and the temporal onset. Conversely, perceptual disturbances, delusions, affective lability, psychomotor agitation, or fluctuations were items, which identified delirium less correctly. Further, the severities of inattentiveness and visuo-spatial impairment were indicative of delirium in both alert- or calmness and drowsiness.

The impairment in the cognitive domain, psychomotor retardation, and sleep–wake cycle disturbances correctly identified delirium irrespective of the level alertness. Further, inattentiveness and — to a lesser degree — visuo-spatial impairment could represent a specific marker for delirium in the intensive care setting meriting further evaluation.

Caregiving for family members at their end of life is stressful. Caregivers’ strain, burden, or stress has been measured in various geographical and sociodemographic contexts. The concept of stress, burden, and strain are sometimes used interchangeably. By analysing the factor structure of the Chinese version of the Modified Caregiver Strain Index (C-M-CSI), this study aimed to examine the caregiving strain concept and its demographic correlates.

A sample of 453 family caregivers of patients with a terminal illness in Hong Kong was employed. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed. In addition, generalized linear models (GLM) were used to examine the demographic correlates.

The EFA yielded a 3-factor model termed “Perception of Caregiving,” “Empathetic Strain,” and “Adjustment Demand.” This 3-factor model explained 50% of the variance and showed good internal consistency. The CFA confirmed the 3-factor construct with satisfactory internal reliability (χ2 [61, N = 226] = 108.86, p < 0.001, CFI = 0.96, TLI = 0.95, SRMR = 0.04, and RMSEA = 0.06). Inspired by this factor structure and concepts of stress and strain from engineering discipline, a new model of caregiver strain is proposed. Additionally, family caregivers of non-cancer patients, who were not living with the patient, or younger were associated negatively with different dimensions of caregiver strain.

The results gave insights into the advancement of the conceptualization of caregiver strain, its multidimensional nature, and process of change, which inform directions for future research and practices.