OBJECTIVE: Communication and patient-centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour "starting a conversation about palliative care with a professional carer" from the perspective of people with incurable cancer.
METHODS: A qualitative study using semi-structured face-to-face interviews with 25 people with incurable cancer: 13 not (yet) receiving palliative care and 12 receiving palliative care; 4 started the conversation themselves. Determinants related to the defined behaviour were matched with concepts in existing behavioural theories.
RESULTS: Both positive and negative stances towards starting a conversation about palliative care with a professional carer were found. Influencing behavioural factors were identified, such as knowledge (e.g. about palliative care), attitude (e.g. association of palliative care with quality of life) and social influence (e.g. relationship with the professional carer). We modelled the determinants into a behavioural model.
CONCLUSION: The behavioural model developed helps to explain why people with incurable cancer do or do not start a conversation about palliative care with their professional carer. By targeting the modifiable determinants of the model, promising interventions can be developed to help patients taken the initiative in communication about palliative care with a professional carer.
BACKGROUND: Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined.
OBJECTIVE: To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time.
METHODS: In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999.
RESULTS: Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient's end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design.
CONCLUSIONS: The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.
Context: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care?
Objectives: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool.
Methods: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study.
Results: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92).
Conclusion: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.
BACKGROUND: Palliative nursing care provides the best possible quality of life (QoL) for patients who face life-threatening conditions, such as breast cancer, and their families. It seems that coping with breast cancer can affect couples' QoL. Hence, this study aimed to assess the potential role of ways of coping (WOC) in QoL among husbands of women with breast cancer.
METHOD: In this cross-sectional study, 150 men whose wives were affected by non-metastatic breast cancer and were at least 4 months post-diagnosis, were recruited. The Persian version of the WOC questionnaire (WOCQ) and the World Health Organization's QoL brief questionnaire (WHOQoL-BREF) were used to measure WOC and QoL. ThePearson correlation test was applied to assess bivariate correlation of the variables.
FINDINGS: A significant direct correlation was found between the total WHOQoL-BREF score and all subscales of WHOQ, except escape-avoidance coping (r=-0.017, P=0.830). Most dimensions of the WHOQoL-BREF and WOCQ subscales were correlated significantly and directly. Nevertheless, escape-avoidance coping had a significant indirect correlation with the physical dimension of WHOQoL-BREF (r=-0.220, P=0.007).
CONCLUSION: Findings indicated a need for coping-based interventions in palliative nursing to improve QoL in husbands of women with breast cancer.
Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
Objectives: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
Prolonged Grief (PG) is recognized as a potentially debilitating post-bereavement syndrome. Theoretical models of PG highlight the importance of both approach and avoidance behaviours in maintaining the syndrome. Research to date has focussed primarily on investigating avoidance in response to loss reminders. Comparatively few studies have indexed approach behaviours in PG. We use a quasi-experimental paradigm to simultaneously examine approach and avoidance behaviours to reminders of the deceased. Fifty-five bereaved individuals with and without PG responded to stimuli showing the deceased's name, an attachment figure's name, a neutral name, or a letter string, by pulling or pushing a joystick according to a whether the stimuli was a word or not. Concurrent visual feedback created the illusion that the images were either approaching or receding from the participant. Participants with PG were quicker to pull than push the three name stimuli, with quicker pulling of the deceased and attachment name than the neutral name. Non-PG participants responded more quickly to the attachment name but evidenced no relative approach or avoidance of any stimuli. Findings provide behavioural evidence about approach behaviour in PG, and are discussed with references to models that recognise the role of yearning for the deceased in PG.
BACKGROUND: Existential distress is a term used when patients who are coming towards the end of their lives exhibit profound suffering, related particularly to their thoughts on life and existence. The clinical expression of this phenomenon has not been widely researched, and so specialist palliative care nurses were asked how they identify and manage this patient cohort.
AIMS: To explore how palliative-care nurses identify patients with existential distress and manage their needs.
METHODS: A qualitative descriptive design with thematic content analysis of transcribed interviews.
FINDINGS: Behavioural changes, agitation, social withdrawal and communication difficulties are identified as indicators of possible existential distress. Susceptible patient groups are identified. Nurses acknowledged that caring for patients with existential distress can be emotionally demanding. Being present and building relationships with patients are identified as enabling meaning-making. Sedation for refractory distress is seen as a last resort.
CONCLUSION: Early identification of existential distress by carers could enable timely intervention (counselling, psychotherapy and or spiritual guidance) to improve the patients' quality of life in the terminal phase of their illness and avoid intractable or refractory existential distress that may necessitate palliative sedation.
Transference and countertransference influence any human interaction, including the patient-clinicianrelationship. Transference is the unconscious redirection of a patient's feelings, attitudes, and desires, often regarding a close personal relationship in their earlier life, onto the clinician. Countertransference is the unconcious redirection of the clinician's feelings, attitudes, and desires about a close personal relationship onto the patient. This Fast Fact illustrates the impact of unrecognized transference and countertransference and offers strategies to mitigate their consequences.
Humans were once considered unique in having a concept of death but a growing number of observations of animal responses to dying and dead conspecifics suggests otherwise. Complex arrays of behaviors have been described ranging from corpse removal and burial among social insects to quiet attendance and caregiving among elephants and primates. Less frequently described, however, are behavioral responses of individuals from different age/sex classes or social position toward the death of conspecifics. We describe behavioral responses of mountain gorillas (Gorilla beringei beringei) to the deaths of a dominant silverback and a dominant adult female from the same social group in Volcanoes National Park in Rwanda and the responses of Grauer's gorillas (Gorilla b. graueri) to the corpse of an extra-group silverback in Kahuzi-Biega National Park, Democratic Republic of Congo. In gorillas, interactions between groups or with a lone silverback often result in avoidance or aggression. We predicted that: (i) more individuals should interact with the corpses of same-group members than with the corpse of the extra-group silverback; (ii) adult females with infants should avoid the corpse of the extra-group silverback; and (iii) in the mountain gorilla cases, individuals that shared close social relationships with the dead individual should spend more time with the corpse than other individuals in the group. We used a combination of detailed qualitative reports, photos, and videos to describe all occurrences of affiliative/investigative and agonistic behaviors observed at the corpses. We observed similar responses toward the corpses of group and extra-group individuals. Animals in all three cases showed a variety of affiliative/investigative and agonistic behaviors directed to the corpses. Animals of all age/sex classes interacted with the corpses in affiliative/investigative ways but there was a notable absence of all adult females at the corpse of the extra-group silverback. In all three cases, we observed only silverbacks and blackbacks being agonistic around and/or toward the corpses. In the mountain gorilla cases, the individuals who spent the most time with the corpses were animals who shared close social relationships with the deceased. We emphasize the similarity in the behavioral responses around the corpses of group and extra-group individuals, and suggest that the behavioral responses were influenced in part by close social relationships between the deceased and certain group members and by a general curiosity about death. We further discuss the implications close interactions with corpses have for disease transmission within and between gorilla social groups.
With death and dying in intensive care units, there should be bereavement support for families. We propose placing an illustration of a candle on the door of an unresponsive dying patient, with additional illustrations of votive candles at the nurses' station opposite to the door as a neutral way of identifying these rooms with patients who transitioned to comfort care or who have died. The candle illustrations encourage staff members to modify their words, silence themselves, and reflect. After a 1-year tryout in the neurointensive care unit with a strong positive experience for staff and families, it can be perceived as a symbol of tranquility.
BACKGROUND: Most seriously ill older adults visit the emergency department (ED) near the end of life, yet no feasible method exists to empower them to formulate their care goals in this setting.
OBJECTIVE: To develop an intervention to empower seriously ill older adults to formulate their future care goals in the ED.
DESIGN: Prospective intervention development study.
SETTING: In a single, urban, academic ED, we refined the prototype intervention with ED clinicians and patient advisors. We tested the intervention for its acceptability in English-speaking patients ‡ 65 years old with serious illness or patients whose treating ED clinician answered ‘‘No’’ to the ‘‘surprise question’’ (‘‘would not be surprised if died in the next 12 months’’). We excluded patients with advance directives or whose treating ED clinician determined the patient to be inappropriate.
MEASUREMENTS: Our primary outcome was perceived acceptability of our intervention. Secondary outcomes included perceived main intent and stated attitude toward future care planning.
RESULTS: We refined the intervention with 16 mock clinical encounters of ED clinicians and patient advisors. Then, we administered the refined intervention to 23 patients and conducted semistructured interviews afterward. Mean age of patients was 76 years, 65% were women, and 43% of patients had metastatic cancer. Most participants (n = 17) positively assessed our intervention, identified questions for their doctors, and reflected on how they feel about their future care.
CONCLUSION: An intervention to empower seriously ill older adults to understand the importance of future care planning in the ED was developed, and they found it acceptable.
BACKGROUND: Emergency department visits towards the end of life by patients with cancer are increasing over time. This is despite evidence of an association with poor patient and caregiver outcomes and most patients preferring home-based care.
AIM: To identify socio-demographic and clinical factors associated with end-of-life emergency department visits and determine the relationship between patients' prior emergency department use and risk of multiple ( 2) visits in the last month of life.
DESIGN: Population-based cohort study.
SETTING/PARTICIPANTS: All adults who died from cancer, in England, between 1 April 2011 and 31 March 2012. Our primary outcome was the adjusted odds ratio for multiple emergency department visits in the last month of life, derived using multivariable logistic regression.
RESULTS: Among 124,030 cancer decedents (52.9% men; mean age: 74.1 years), 30.7% visited the emergency department once in their last month of life and 5.1% visited multiple times. Patients were more likely to visit multiple times if they were men, younger, Asian or Black, of lower socio-economic status, had greater comorbidity, and lung or head and neck cancer. Patients with >=4 emergency department visits in the 11 months prior to their last month of life were also more likely to make multiple visits during their last 30 days; this followed a dose-response pattern ( p for trend <0.001).
Patients with greater comorbidity, lung or head and neck cancer and a higher number of previous emergency department visits are more likely to visit the emergency department multiple times in the last month of life. Previously reported socio-demographic factors (men, younger age, Black, low socio-economic status) are also confirmed for the first time in a UK population.
BACKGROUND: It is necessary to understand behaviours that contribute to improvement in the quality of end-of-life care; use of behavioural theories allows identification of factors underlying end-of-life care behaviour, but little is known about the extent to which, and in what manner, these theories are used in an end-of-life care research context.
AIM: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
DESIGN: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
DATA SOURCES: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
RESULTS: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies - 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative - for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
CONCLUSION: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
The present study investigated differences in various aspects of facial behavior among female patients with complicated grief (CG; n = 18) and healthy controls (n = 18) during the assessment of their attachment representation using the Adult Attachment Projective Picture System. All patients were classified with an unresolved attachment status. On a behavioral level, they demonstrated longer gazing behavior away from the interviewer and the picture stimuli, more speech pauses, less smiling toward the interviewer, and more crying, especially in response to stimuli portraying the theme of loss. Focusing on the in-depth analysis of death-related stimuli using the Facial Action Coding System, patients demonstrated less facial affective behavior, less disgust, and less smiling in response to these stimuli compared with the healthy controls. The impaired capacity of patients with CG responding in an affective appropriate manner regarding bereavement might be interpreted as a specific emotion dysregulation when their attachment and mourning system is activated.
With the growing care needs for the older population at the end of their lives, there has been a substantial increase in attention to the management of the patient with dementia in hospice and palliative care services. This article reviews issues in access to care and the optimal management of the patient with dementia, particularly in the context of neuropsychiatric complexities. Special issues such as delirium, cachexia, behavioral symptoms, and pain management are addressed. Future challenges in research such as the development of better prognostic models are noted as well as the importance of attention to access to care.
Quantitative studies have found that suicide bereavement is associated with suicide attempt, and is perceived as the most stigmatising of sudden losses. Their findings also suggest that perceived stigma may explain the excess suicidality. There is a need to understand the nature of this stigma and address suicide risk in this group. We aimed to describe and compare the nature of the experiences of stigma reported by people bereaved by suicide, sudden unnatural death, and sudden natural death, and identify any commonalities and unique experiences. We conducted a population-based cross-sectional survey of 659,572 staff and students at 37 British higher educational institutions in 2010, inviting those aged 18–40 who had experienced sudden bereavement of a close contact since the age of 10 to take part in an on-line survey and to volunteer for an interview to discuss their experiences. We used maximum variation sampling from 1398 volunteer interviewees to capture a range of experiences, and conducted individual face-to-face semi-structured interviews to explore perceptions of stigma and support. We continued sampling until no new themes were forthcoming, reaching saturation at n = 27 interviews (11 participants bereaved by suicide). We employed thematic analysis to identify any distinct dimensions of reported stigma, and any commonalities across the three groups. We identified two key themes: specific negative attitudes of others, and social awkwardness. Both themes were common to interviewees bereaved by suicide, sudden unnatural death, and sudden natural death. All interviewees reported the experience of stigmatising social awkwardness, but this may have been experienced more acutely by those bereaved by suicide due to self-stigma. This study provides evidence of a persistent death taboo in relation to sudden deaths. There is potential for anti-stigma interventions to reduce the isolation and social awkwardness perceived by people bereaved suddenly, particularly after suicide loss.
OBJECTIVES: Complicated grief (CG) following bereavement significantly increases the risk for mood and anxiety disorders. The severity of grief reactions may be interactively influenced by temperamental and psychological factors such as behavioural inhibition (BI) and separation anxiety (SA) as well as biological factors. Given its central role in attachment and stress processing, a genetic variant in the oxytocin receptor (OXTR) gene was thus investigated in order to elucidate the direction of association as well as its interaction with BI and SA in the moderation of CG severity.
METHODS: Ninety-three patients with mood and anxiety disorders were evaluated for CG by means of the Inventory of Complicated Grief (ICG), for BI using the Retrospective Self-Report of Inhibition (RSRI), and for symptoms of SA during adulthood using the Adult Separation Anxiety Scale (ASA-27). All patients were genotyped for OXTR rs2254298.
RESULTS: OXTR genotype interacted with BI and, on a trend-level, with adult SA, to increase CG. Specifically, higher levels on the RSRI and ASA-27 scales, respectively, were related to higher ICG scores in GG genotype carriers.
CONCLUSIONS: The present study for the first time suggests a gene-environment interaction effect of an OXTR gene variant with behavioural inhibition and possibly also symptoms of adult separation anxiety in the moderation of vulnerability for complicated grief.
BACKGROUND: Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care.
OBJECTIVES: The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care.
FINDINGS: Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
OBJECTIVE: Behavioral and psychological symptoms of dementia (BPSD) are among the most challenging aspects of Alzheimer disease for patients and their families. Previous studies have found associations between informant-reported retrospective personality and BPSD; we test whether prospective, self-reported personality predicts who will experience these symptoms.
METHODS: Deceased participants from the Health and Retirement Study who had evidence of cognitive impairment at the end of life (N = 1988) were selected to examine whether self-reported five-factor model personality traits, measured up to 8 years before death, were associated with proxy-reported BPSD.
RESULTS: Neuroticism was associated with increased risk of the 7 BPSD: got lost in familiar places, wandered off, were not able to be left alone, experienced hallucinations, suffered from depression, had periodic confusion, and an uncontrolled temper. These associations were not moderated by age, gender, race, or education. Conscientiousness was associated with fewer symptoms overall and especially with lower risk of getting lost in familiar places and not being able to be left alone.
CONCLUSIONS: The present research indicates that self-reported personality, particularly Neuroticism, is associated prospectively with risk for a wide range of behavioral symptoms for individuals who had cognitive impairment at the end of life. The use of self-reported personality traits can help aid in identifying who is most at risk for behavioral symptoms. Such information may be useful for nonpharmacological interventions tailored to the individual's personality to reduce the prevalence and burden of these BPSD.