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BACKGROUND: Advance care planning (ACP) aims to ensure that people with chronic or advanced disease receive medical care that is consistent with their values and preferences. However, professionals may find it challenging to engage these patients in conversations about the end of life. We sought to develop a pictorial tool to facilitate communication around ACP. METHODS: This was a three-phase study. In phase 1, we used the nominal group and Delphi techniques to achieve expert consensus regarding the conceptual content of the tool. In phase 2, a professional cartoonist was commissioned to create a series of cartoons representing each of the content areas resulting from the Delphi process. The pictorial tool was then administered (phase 3) with a sample of individuals with advanced/chronic disease to explore whether the cartoons were easy to understand and conveyed the intended message. RESULTS: Following a three-round Delphi process, consensus was reached regarding a set of 12 key content areas that should be considered in the context of an ACP interview. The cartoons created to represent each of the 12 areas were then reviewed and ordered so as to reflect the typical stages of an end-of-life care interview. After administering the pictorial tool with 24 frail older adults with advanced/chronic disease, changes were made to 9 of the 12 cartoons. CONCLUSIONS: The new pictorial tool comprises a set of 12 cartoons that can guide professionals as they seek to engage frail older adults with advanced/chronic disease in conversations about the end of life and ACP.
Subject(s)
Advance Care Planning , Communication , Delphi Technique , Humans , Female , Aged , Male , Aged, 80 and over , Consensus , Terminal Care/methods , Chronic Disease/therapy , Frail Elderly , Cartoons as TopicABSTRACT
BACKGROUND: Euthanasia has been incorporated into the health services of seven countries. The legalisation of these practices has important repercussions for the competences of nurses, and it raises questions about their role. When a patient with advanced disease expresses a wish to die, what is expected of nurses? What are the needs of these patients, and what kind of care plan do they require? What level of autonomy might nurses have when caring for these patients? The degree of autonomy that nurses might or should have when it comes to addressing such a wish and caring for these patients has yet to be defined. Recognising the wish to die as a nursing diagnosis would be an important step towards ensuring that these patients receive adequate nursing care. This study-protocol aims to define and validate the nursing diagnosis wish to die in patients with advanced disease, establishing its defining characteristics and related factors; to define nursing-specific interventions for this new diagnosis. METHODS: A prospective three-phase study will be carried out. Phase-A) Foundational knowledge: an umbrella review of systematic reviews will be conducted; Phase-B) Definition and validation of the diagnostic nomenclature, defining characteristics and related factors by means of an expert panel, a Delphi study and application of Fehring's diagnostic content validation model; Phase-C) Definition of nursing-specific interventions for the new diagnosis. At least 200 academic and clinical nurses with expertise in the field of palliative care or primary health care will be recruited as participants across the three phases. DISCUSSION: The definition of the wish to die as a nursing diagnosis would promote greater recognition and autonomy for nurses in the care of patients who express such a wish, providing an opportunity to alleviate underlying suffering through nursing-specific interventions and drawing attention to the needs of patients with advanced disease. The new diagnosis would be an addition to nursing science and would provide a framework for providing care to people with advanced disease who express such a wish. Nurses would gain professional autonomy about identifying, exploring and responding clinically to such a wish.
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BACKGROUND: The palliative care initial encounter can have a positive impact on the quality of life of patients and family carers if it proves to be a meaningful experience. A better understanding of what makes the encounter meaningful would reinforce the provision of person-centred, quality palliative care. AIM: To explore the expectations that patients with cancer, family carers and palliative care professionals have of this initial encounter. DESIGN: Qualitative descriptive study with content analysis of transcripts from 60 semi-structured interviews. SETTING/PARTICIPANTS: Twenty patients with cancer, 20 family carers and 20 palliative care professionals from 10 institutions across Spain. RESULTS: Four themes were developed from the analysis of interviews: (1) the initial encounter as an opportunity to understand what palliative care entails; (2) individualised care; (3) professional commitment to the patient and family carers: present and future; and (4) acknowledgement. CONCLUSION: The initial encounter becomes meaningful when it facilitates a shared understanding of what palliative care entails and acknowledgement of the needs and/or roles of patients with cancer, family carers and professionals. Further studies are required to explore how a perception of acknowledgement may best be fostered in the initial encounter.
Subject(s)
Neoplasms , Palliative Care , Humans , Caregivers , Quality of Life , Family , Qualitative Research , Neoplasms/therapyABSTRACT
Hospital isolation is common for people during infectious disease outbreaks. Anxiety, stress, depression and other psychosocial outcomes have been reported due to these measures. However, there is scarce evidence about the experience of being isolated and about best practices for empathic clinical care in these circumstances. The aim of this study was to explore the experience of isolation on patients hospitalized during an infectious disease outbreak. A systematic review and meta-ethnography was carried out. A search strategy was applied to the PubMed, CINAHL, Web of Science, and PsycINFO databases on April 14, 2021 and again May 2, 2022. Data synthesis was conducted using Noblit and Hare's method of qualitative thematic synthesis. Twenty reports were included in this review: 16 qualitative, two mixed-methods (only the qualitative part was analyzed), plus 2 personal view pieces. They described the experiences of a total of 337 people hospitalized and isolated with an infectious disease. Following analysis and coding of data, four themes emerged: 1) Feelings triggered by isolation; 2) Coping strategies; 3) Connection/disconnection; 4) Factors that influence the experience of isolation. Despite a sensitive search strategy, limited studies represent patient experiences using qualitative methods. The experience of isolation among patients hospitalized during an outbreak is characterized by fear, perceived stigma, and a sense of disconnection from others and the outside world due to a lack of information. Fostering a person-centered care model could help hospitalized patients develop adaptive mechanisms that minimize the impact of isolation.
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BACKGROUND: In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare. METHODS: We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Catalan; c) outpatients diagnosed with advanced cancer; d) Eastern Cooperative Oncology Group (ECOG) between 0 and 3; e) judged by their physician or nurse to be emotionally stable; f) considered to have control over their illness and circumstances according to their responsible physician; and g) signed informed consent. RESULTS: We interviewed eight participants (ages ranged from 29 to 70 years, six were female). Two themes were identified: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, character traits underlying a need for control; sense of lack of care as a source of loss of control; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and adjusting the focus of control. The data allowed us to identify strategies that promote a sense of control in these patients. CONCLUSIONS: The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. These findings selectively reflect experiences of those who see themselves able to effect outcomes in life, suggesting future research should address how both family members and healthcare professionals can help to empower all patients.
Subject(s)
Hospice and Palliative Care Nursing , Neoplasms , Adolescent , Adult , Aged , Family , Female , Humans , Male , Middle Aged , Neoplasms/psychology , Neoplasms/therapy , Palliative Care/psychology , Qualitative ResearchABSTRACT
BACKGROUND: The comprehensive assessment of needs in palliative care identifies where patients most want attention to guide clinical decisions that tailor care provision from their first encounters. AIM: To define how and what needs are identified by the comprehensive assessment of needs in the original peer-reviewed articles in the field of palliative care. DESIGN: An integrative systematic review as outlined by Whittemore and Knafl. Quality appraisal performed using the Mixed Methods Appraisal Tool. DATA SOURCES: PubMed, CINAHL, PsycINFO, Web of Science databases searched through May 2019 and updated in July 2020. RESULTS: Forty-nine articles met inclusion criteria for original articles in English or Spanish reporting comprehensive assessment of needs of adult patients receiving palliative care. The majority (41/49) of studies were moderate to high quality. Two themes were identified: (1) How a comprehensive assessment of needs should be carried out in palliative care, which reflected a preference to develop structured tools for assessment; (2) What needs of patients should be assessed in the comprehensive assessment of needs in palliative care, which conveyed a trend to assess beyond core domains - physical, psychological, social, spiritual - with information and practical most prevalent, but with substantial variation in specifying and classifying needs into domains. CONCLUSIONS: The assessment of needs in palliative care is comprehensive but lacks consensus on the needs and domains that should be assessed by the palliative care team. Future studies should better define what needs can be standardized into the assessment to improve process of care and patient satisfaction.
Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Adult , HumansABSTRACT
Fueled by increasing recognition that cancer-related cognitive impairment impacts quality of life among cancer survivors, we suggest that researchers and clinicians expand their focus to acknowledge the impact of cognitive changes for those with advanced cancer. We outline five reasons that patients with advanced cancer would benefit from comprehensive assessments that include questions about cognitive complaints. Advanced cancer has all the characteristics that would lead to cognitive changes. Patients with advanced cancer may have a higher risk for cognitive impairment due to aggressive chemotherapies, higher symptom burden, and greater psychosocial distress. This commentary contextualizes how cognitive complaints may relate to multiple factors relevant to the advanced cancer patient. By simply asking the patient about their perceived cognitive changes, we argue this may be a stepping stone to finding non-pharmacological ways to address cognitive impairment.
Subject(s)
Cognitive Dysfunction/etiology , Neoplasms/psychology , Cancer Survivors , Cognitive Dysfunction/psychology , Humans , Quality of LifeABSTRACT
BACKGROUND: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life. AIM: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics. DESIGN: A comparative cross-sectional study. PARTICIPANTS: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores ⩾1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale. RESULTS: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052). CONCLUSION: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.
Subject(s)
Attitude to Death , Neoplasms/psychology , Quality of Life , Terminally Ill , Adult , Cross-Sectional Studies , Humans , Palliative Care , Right to DieABSTRACT
BACKGROUND: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress. AIM: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death. DESIGN: Descriptive, cross-sectional study. SETTING/PARTICIPANTS: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment's importance. RESULTS: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it. CONCLUSIONS: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.
Subject(s)
Attitude to Death , Neoplasms/psychology , Stress, Psychological , Suicide, Assisted/psychology , Terminally Ill/psychology , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Socioeconomic Factors , Surveys and QuestionnairesABSTRACT
Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.
Subject(s)
Attitude to Death , Caregivers , Emotions , Family , Interpersonal Relations , Stress, Psychological , Terminal Care/psychology , Death , Humans , Qualitative Research , Self Concept , Terminally Ill/psychologyABSTRACT
OBJECTIVE: The objective of the study is to test a model in which perceived loss of dignity and control are proposed, along with symptoms of depression and functional impairment, as risk factors for the wish to hasten death (WTHD) in advanced cancer patients. METHODS: This was a cross-sectional study of 193 patients in an oncology unit. Outcome measures included perceived control, performance status, symptoms of depression, perceived dignity, and the WTHD. Structural equation modeling was performed. RESULTS: Structural equation modeling showed that perceived loss of control (-0.402) and functional impairment (-0.21) were risk factors for perceived loss of dignity. Loss of control (-0.385) and functional impairment (-0.283) were also risk factors for symptoms of depression. Perceived loss of dignity and symptoms of depression were the most proximal determinants of the WTHD, on which they had a direct, positive, and significant effect (0.246 and 0.209, respectively). Therefore, both symptoms of depression and perceived loss of dignity independently predicted the WTHD and mediated the effects of perceived loss of control and functional impairment on this wish. CONCLUSIONS: The hypothesized model provides evidence for the impact of the four aforementioned factors on the WTHD. Our results suggest that personalized care plans which are able to enhance the sense of dignity and control among advanced cancer patients could help to reduce the likelihood or intensity of a WTHD.
Subject(s)
Neoplasms/psychology , Quality of Life/psychology , Respect , Self Efficacy , Terminally Ill/psychology , Adult , Aged , Attitude to Death , Cross-Sectional Studies , Death , Depression/psychology , Female , Humans , Male , Middle Aged , Models, Psychological , Neoplasms/mortality , Perception , Stress, Psychological/psychologyABSTRACT
INTRODUCTION: The Desire for Death Rating Scale (DDRS) and the short form of the Schedule of Attitudes toward Hastened Death (SAHD-5) are different approaches to assessing the wish to hasten death (WTHD). Both have clinical threshold scores for identifying individuals with a meaningfully elevated WTHD. However, the agreement between the 2 measures and patient opinions about assessment of the WTHD are unknown. OBJECTIVES: To compare the DDRS and SAHD-5 and to analyze patient opinions about assessment of the WTHD. METHODS: The WTHD was assessed in 107 patients with advanced cancer using both the DDRS and SAHD-5. Patients were subsequently asked their opinion about this assessment. RESULTS: Correlation between scores on the SAHD-5 and the DDRS was moderate, Spearman rho = 0.67 (P < .01). The SAHD-5 identified 13 patients (12.1%) at risk of the WTHD, and the DDRS identified 6 patients (5.6%) with a moderate-high WTHD (P > .05). Concordance between the DDRS and SAHD-5 in identifying individuals with an elevated WTHD was poor when using recommended cut-off scores, κ = 0.37 (P < 0.01) but could be improved by using different thresholds. Only 4 patients (3.8%) regarded the assessment questions as bothersome, and 90.6% considered it important that health-care professionals inquire about the WTHD. CONCLUSIONS: The SAHD-5 and DDRS appear to be appropriate methods for assessing the WTHD and could provide complementary information in clinical practice: the SAHD-5 to screen for risk of the WTHD and the DDRS as a clinical interview to explore it in greater detail. Assessment of the WTHD is well accepted by palliative care cancer patients.
Subject(s)
Neoplasms/psychology , Quality of Life/psychology , Surveys and Questionnaires/standards , Terminally Ill/psychology , Aged , Attitude to Death , Female , Humans , Male , Middle Aged , Palliative Care/psychologyABSTRACT
BACKGROUND: Acromegaly (ACRO) is associated with elevated cardiovascular risk, although the prevalence of coronary artery disease (CAD) is unclear. Increased epicardial adipose tissue (EAT) and elevated cystatin-C (Cys-C) levels are cardiovascular risk factors, also related to the progression of CAD in several populations. AIMS: To measure the severity and extent of CAD in patients with ACRO and to determine whether either EAT or Cys-C reflect higher cardiovascular risk in patients with ACRO than in healthy controls. SUBJECTS AND METHODS: Case-control study, of 35 patients with ACRO (19 males, 17 with active disease) and 35 age-, gender- and body mass index (BMI)-matched healthy controls; mean age was 48·1 ± 8·1 years and mean BMI was 27·6 ± 4·8 kg/m2 . Cys-C was measured by an immunoturbidimetric assay. The 10-year risk of developing a coronary event was calculated using the Framingham Risk Score (FRS). EAT index (volume indexed to body surface area), and severity and extent of CAD were measured using a 256-slice multidetector computed tomography scanner (iCT-256 Philips Healthcare, Amsterdam). RESULTS: Coronary artery disease lesions, EAT index and severity/extent of CAD were similar between patients with ACRO and controls. Forty-four per cent of patients with ACRO had mild coronary lesions associated with greater EAT index (ß = 0·022, P = 0·036). Cys-C levels correlated with both EAT index (ρ = 0·386, P = 0·031) and FRS (ρ = 0·477, P = 0·004) in patients with ACRO only, despite similar prevalence of traditional cardiovascular risk factors. In a multiple linear regression model, both Cys-C levels (ß = 0·369, P = 0·007) and EAT index (ß = 0·29, P = 0·025) predicted FRS (R2 = 0·613). CONCLUSIONS: In patients with ACRO, both Cys-C and EAT index might be used as noninvasive predictors of cardiovascular risk.
Subject(s)
Acromegaly/complications , Adipose Tissue/pathology , Cardiovascular Diseases/diagnosis , Cystatin C/blood , Adult , Cardiovascular Diseases/etiology , Case-Control Studies , Female , Humans , Male , Middle Aged , Multidetector Computed Tomography , Pericardium/pathology , Predictive Value of TestsABSTRACT
In recent years, health-related quality of life (QoL) has been considered an important outcome for clinical management of acromegaly. Poor QoL has been described in acromegalic patients with active disease as well as after endocrine cure. It is known that acromegaly determines many physical problems and psychological dysfunctions that unavoidably impact on patients' QoL. Moreover, there is evidence that factors, such as radiotherapy or post-treatment GH deficiency also impair QoL in patients diagnosed with acromegaly. Thus, including the assessment of QoL in daily clinical practice has become fundamental to understand the consequences of acromegaly and the impact on the patients' daily life.
Subject(s)
Acromegaly , Quality of Life , Female , Humans , Male , Surveys and QuestionnairesABSTRACT
PURPOSE: Cushing's syndrome (CS) is an endocrine disorder due to prolonged exposure to cortisol. Recently, microstructural white matter (WM) alterations detected by diffusion tensor imaging (DTI) have been reported in CS patients, and related to depression, but other functional significances. remain otherwise unclear. We aimed at investigating in more depth mood symptoms in CS patients, and how these relate to cognition (information processing speed), and to WM alterations on DTI. METHODS: The sample comprised 35 CS patients and 35 healthy controls. Beck Depression Inventory-II (BDI-II) was used to measure depressive symptoms, State-Trait Anxiety Inventory (STAI) to assess anxiety, and processing speed was measured by the Symbol Digit Modalities Test (SDMT). DTI studies were acquired using a 3-Tesla Philips-Achieva MR-facility. Voxelwise statistical analysis of fractional anisotropy (FA), mean, axial and radial diffusivities (MD, AD, RD) data were performed using FMRIB Software Library. Correlation analysis were obtained between mood and processing speed variables, and FA, MD, AD and RD values, taking both CS patients and healthy controls. RESULTS: Active, controlled and cured CS patients showed greater depression (F = 12.4, p < 0.001), anxious state (F = 4.8, p = 0.005) and anxious trait (F = 9.6, p < 0.001) scores, than controls. Using the entire sample, depression scores correlated negatively to FA and positively to RD values. Although there were no differences in processing speed between groups, SDMT scores correlated positively to both FA and AD values. CONCLUSIONS: There were greater depressive and anxious symptoms in CS patients than in healthy controls, but no difference in processing speed. However, DTI is related to depression and information processing speed in CS.
Subject(s)
Cushing Syndrome/diagnostic imaging , Diffusion Tensor Imaging/methods , Magnetic Resonance Imaging/methods , White Matter/diagnostic imaging , Adult , Case-Control Studies , Depression/pathology , Female , Humans , Male , Middle AgedABSTRACT
INTRODUCTION: Cushing syndrome (CS) of any etiology (adrenal, pituitary or ectopic) impacts negatively on health-related quality of life (QoL), especially in active hypercortisolism but also after endocrine cure. Both generic questionnaires like the short-form 36 health survey -SF-36- and the derived SF-12, or the Hospital Anxiety and Depression Scale (HADS), and disease-specific measures like the CushingQoL and the Tuebingen CD-25 questionnaires have provided information on the impact of CS on patients perceived health. MATERIALS AND METHODS: Studies published since January 2013 until November 2014 on QoL in patients with CS were identified, reviewed and summarized. CONCLUSIONS: Treatment of CS improves patients perceived QoL, but it often takes many months and often never normalizes. In parallel to persistent QoL impairment in cured CS, brain and cerebellar volume are reduced. Depression, anxiety and cognitive dysfunction are common. Pediatric patients with CS also present worse QoL than normal children, as well as additional issues like delayed growth and pubertal development, next to abnormal body composition, psychological and cognitive maturation. Fluoxetine has been suggested as a neuroprotectant and antidepressant for patients with CS, although no prospective studies are yet available. The CushingQoL questionnaire has been mapped to well-validated instruments like SF-36 or EQ-5D, and therefore may be used in cost-utility and other health economy studies.
Subject(s)
ACTH-Secreting Pituitary Adenoma/psychology , Adenoma/psychology , Pituitary ACTH Hypersecretion/psychology , Quality of Life , ACTH-Secreting Pituitary Adenoma/diagnosis , ACTH-Secreting Pituitary Adenoma/epidemiology , ACTH-Secreting Pituitary Adenoma/therapy , Adenoma/diagnosis , Adenoma/epidemiology , Adenoma/therapy , Comorbidity , Cost of Illness , Humans , Pituitary ACTH Hypersecretion/diagnosis , Pituitary ACTH Hypersecretion/epidemiology , Pituitary ACTH Hypersecretion/therapy , Predictive Value of Tests , Prognosis , Psychometrics , Risk Assessment , Risk Factors , Surveys and QuestionnairesABSTRACT
CONTEXT AND OBJECTIVE: Cushing's syndrome (CS) is caused by a glucocorticoid excess. This hypercortisolism can damage the prefrontal cortex, known to be important in decision-making. Our aim was to evaluate decision-making in CS and to explore cortical thickness. SUBJECTS AND METHODS: Thirty-five patients with CS (27 cured, eight medically treated) and thirty-five matched controls were evaluated using Iowa gambling task (IGT) and 3 Tesla magnetic resonance imaging (MRI) to assess cortical thickness. The IGT evaluates decision-making, including strategy and learning during the test. Cortical thickness was determined on MRI using freesurfer software tools, including a whole-brain analysis. RESULTS: There were no differences between medically treated and cured CS patients. They presented an altered decision-making strategy compared to controls, choosing a lower number of the safer cards (P < 0·05). They showed more difficulties than controls to learn the correct profiles of wins and losses for each card group (P < 0·05). In whole-brain analysis, patients with CS showed decreased cortical thickness in the left superior frontal cortex, left precentral cortex, left insular cortex, left and right rostral anterior cingulate cortex, and right caudal middle frontal cortex compared to controls (P < 0·001). CONCLUSIONS: Patients with CS failed to learn advantageous strategies and their behaviour was driven by short-term reward and long-term punishment, indicating learning problems because they did not use previous experience as a feedback factor to regulate their choices. These alterations in decision-making and the decreased cortical thickness in frontal areas suggest that chronic hypercortisolism promotes brain changes which are not completely reversible after endocrine remission.
Subject(s)
Cognition Disorders/pathology , Cushing Syndrome/pathology , Decision Making , Executive Function , Prefrontal Cortex/pathology , Adult , Brain/pathology , Case-Control Studies , Cognition Disorders/psychology , Cross-Sectional Studies , Cushing Syndrome/psychology , Female , Frontal Lobe/pathology , Humans , Magnetic Resonance Imaging , Male , Middle Aged , Neuropsychological TestsABSTRACT
CONTEXT: A systematic review of the wish to hasten death among people with life-limiting conditions was published in 2011. Since then, other reviews and primary studies have been published that have added to knowledge regarding the conceptual definition, aetiology and assessment of the wish to hasten death. OBJECTIVES: To provide an updated synthesis of the literature on the wish to hasten death in people with life-limiting conditions. METHODS: An overview of systematic reviews and primary studies was conducted, using an integrative review method. PubMed, CINAHL, Scopus and Web of Science databases were searched, from their inception until 2023. We included all systematic reviews published to date and all primary studies not included in these systematic reviews. RESULTS: Eleven systematic reviews and 35 primary studies were included. We propose that the phenomenon may usefully be considered as existing along a continuum, defined by the extent to which thoughts of dying are linked to action. A total of nine assessment tools have been described. The reported prevalence of the wish to hasten death appears to be influenced by the wording used in assessment instruments, as well as by the cut-off used when applying a particular tool. Depression, pain, functional disability, decreased sense of meaning in life, the sense of being a burden and reduced quality of life are the most widely reported related factors. CONCLUSION: This overview underscores the need for clinical strategies that can identify different manifestations of the wish to hasten death among people with life-limiting conditions.
Subject(s)
Attitude to Death , Humans , Palliative Care , Terminal Care , Quality of Life , Terminally Ill/psychology , Suicide, Assisted/psychologyABSTRACT
BACKGROUND: Proton magnetic resonance spectroscopy ((1) H-MRS) is a sensitive, noninvasive imaging technique capable of measuring brain metabolites in vivo. Chronic exposure to endogenous hypercortisolism in Cushing's syndrome (CS) is associated with negative effects on memory and hippocampal volumes, even after biochemical cure. OBJECTIVE: To investigate metabolites in the hippocampi of CS patients and controls, using (1) H-MRS. PATIENTS AND METHODS: Eighteen right-handed cured CS patients (age 44·8 ± 12·5 years, 12·6 ± 3·8 years of education) and 18 right-handed healthy controls, matched for age (40·0 ± 11·9) and years of education (14·4 ± 3·8), underwent 3-Tesla magnetic resonance imaging (3T MRI) and (1) H-MRS including the head of each hippocampus. Concentrations of Glu (Glutamate), Glx (Glutamate + Glutamine), NAA (N-Acetyl-aspartate), total NAA (N-Acetyl-aspartate + N-Acetyl-aspartyl-Glutamate), Cho (Glycerophosphocholine and Phosphocholine compounds), Cr (Creatine) and MI (mionositol) were measured (mmol/l). Hippocampal volumes (mm(3) ) were additionally calculated using an automated procedure (FreeSurfer). RESULTS: CS patients had lower NAA than controls in the left and right hippocampus (5·2 ± 1·0 vs 6·1 ± 0·7, P < 0·05; 4·9 ± 0·8 vs 6·1 ± 0·6, P < 0·001, respectively), and lower total NAA on the right side (5·7 ± 0·9 vs 6·3 ± 0·9, P < 0·05), suggesting neuronal dysfunction/loss. CS patients had higher Glx than controls in both hippocampi (10·4 ± 1·9 vs 8·6 ± 1·4, P < 0·01; 9·9 ± 1·6 vs 8·9 ± 1·3, P < 0·05, respectively), suggesting glial proliferation, as a repair mechanism after neuronal dysfunction. No differences were found in the other brain metabolites, and there were no differences in left (3815·78 ± 502·96) and right (3980·75 ± 369·44) total hippocampal volumes between CS patients and controls (3945·08 ± 408·90 and 4108·39 ± 365·11, respectively). CONCLUSION: Persistently abnormal metabolites are evidenced in the hippocampi of CS patients despite endocrine cure. These functional alterations could be early markers of glucocorticoid neurotoxicity, preceding hippocampal volume reduction.
Subject(s)
Cushing Syndrome/pathology , Hippocampus/pathology , Magnetic Resonance Spectroscopy/methods , Adult , Cushing Syndrome/physiopathology , Female , Hippocampus/physiopathology , Humans , Male , Middle AgedABSTRACT
BACKGROUND: To explain what cognitive capacity shapes uncertainty in advanced illness by identifying the types of evidence, mapping underlying cognitive processes to uncertainty, and outlining future directions for research and interventions. DESIGN: A systematic scoping review of mixed study designs was carried out following the methodological framework of Arksey and O'Malley (2005) and using qualitative content analysis. METHODS: PubMed, CINAHL, Embase, and PsycINFO were searched for original studies published in full and in English through December 2021 that reported on uncertainty in illness and related cognitions, cognitive science, or cognitive functions. RESULTS: After screening 978, 18 articles met the inclusion criteria for review. We found the cognitive capacity of mental time travel - to relive the past or foresee life in the future - interacted with episodic memory retrieval to inform decision-making, and prospection to imagine, predict or prepare for future outcomes to determine lesser or greater uncertainty in advanced illness. CONCLUSIONS: Mental time travel is a fundamental cognitive function when the future is limited by an advanced illness, to review life as a meaningful narrative. The role of mental time travel to construct or make sense of uncertain futures inherent in advanced illness can inform theory and targets for intervention.