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.

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.

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.

Family members' long-term grief management: A prospective study of factors during ongoing palliative care and bereavement.

OBJECTIVES: Up to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement. METHODS: The participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patient's death. RESULTS: The model selection chose 4 demographic and 4 preloss variables: family member's nervousness and stress, the patient's sense of security during palliative care, family members' sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members' continuing bond - internalized and continuing bond - externalized. SIGNIFICANCE OF RESULTS: How family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.

Cultures that collide: an ethnographic study of the introduction of a palliative care consultation team on acute wards.

BACKGROUND: Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards. PURPOSE: To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures. METHODS: An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography. RESULTS: Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care. CONCLUSION: There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort.

Factors associated with health-related quality of life and burden on relatives of older people with multi-morbidity: a dyadic data study.

BACKGROUND: This study aimed to identify factors associated with health-related quality of life (HRQoL) and the burden on the relatives of older people with multi-morbidity. METHODS: A secondary analysis of baseline data from 296 dyads, including older patients with multimorbidity and their relatives, which were previously collected in a randomized study. The analysis was conducted to select correlated independent variables to enter a final linear regression analysis of two models with different endpoints: the relatives' HRQoL (EQ5D index) and burden (COPE index: Negative impact scale). RESULTS: Sixteen variables correlated with the relatives' HRQoL, and 15 with the relatives' burden. Both the HRQoL and burden correlated with both patient and relative variables. A high HRQoL was associated with relatives' working/studying. A high burden was associated with caring for an older person with changed behaviour. A low burden was associated with the relatives' high scores on positive values of caring, quality of support and HRQoL. CONCLUSION: Older persons and their relatives should be considered as a unit in the development of support of older people in order to increase the health and quality of life of both groups. To support and protect relatives from a high burden, potential measures could include improving the relative's HRQoL and strengthening their ability to find positive values in care and strengthening reliable and good support from others. The relatives' HRQoL explained the variation in the burden. However, the burden did not explain the variation in the HRQoL, which suggests that the relatives' HRQoL is not so readily affected by their burden, whereas the relatives' HRQoL can influence their burden. The variables used in the regression analyses where chosen to reflect important aspects of the relatives' and older persons' situations. The final models explained 38% of the variation in the relatives' burden but only 10% of the variation in their HRQoL. This could be important to consider when choosing outcome assessments in future studies.

Sense of support within the family: a cross-sectional study of family members in palliative home care.

BACKGROUND: Despite evidence that family members' support to each other can be of importance to its members, there are limited studies of factors related to family members' sense of such support during palliative care. AIM: Based on the family systems approach, we evaluated which factors were associated with family members' sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support. DESIGN: A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care. METHODS: Generalised linear models were used to evaluate individual factors related to family members' sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses. RESULTS: Nineteen variables were identified that were significantly associated with the family members' sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members. CONCLUSIONS: Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.

Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals.

BACKGROUND: The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. METHODS: Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. RESULTS: A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. CONCLUSIONS: This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients' and family members' preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.

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.

Elevated levels of CRP and IL-8 are related to reduce survival time: 1-year follow-up measurements of different analytes in frail elderly nursing home residents.

There are only few studies with specific focus on predictors of survival in nursing home residents (NHRs). The aim was to study whether 1-year changes in complete blood count (including hemoglobin, red blood cells, erythrocyte volume fraction, mean corpuscular volume, mean corpuscular hemoglobin concentration, white blood cells count and platelet count), C-reactive protein and interleukin-1ß (IL-1ß), IL-1Ra, IL-6, IL-8 and IL-10, are associated with 8-year survival in elderly NHRs, aged ≥ 80 years. Complete blood count, C-reactive protein and interleukins were measured at baseline, after 6 and 12 months from 167 NHRs aged 80-101 years, mean age 88 ± 4.5 years, 75% of whom were women. Dates of death were collected from the National Death Register 8 years after baseline. Levels of hemoglobin, red blood cells and mean corpuscular hemoglobin concentration were lower after 1-year, but higher for mean corpuscular volume and IL-1ß, compared to baseline or 6 month follow-up. In the Cox regression model with a time-dependent covariate, raised levels of C-reactive protein and IL-8 were associated with reduced survival time. Elevated levels of C-reactive protein and IL-8 during 1-year follow-up were related to reduce lengths of survival in elderly NHRs.

Morbidity and mortality in very old individuals with subsyndromal depression: an 8-year prospective study.

OBJECTIVES: Both morbidity and mortality are elevated for individuals with subsyndromal depression (SSD) compared to non-depression (ND) in those of younger ages, but scientific studies are scarce for very old individuals. The aim of this study was therefore to compare the morbidity and mortality in very old individuals with SSD and ND. DESIGN AND SETTING: An 8-year prospective population-based study was undertaken on 85-year-old individuals in Sweden. MEASUREMENTS: Data were collected from postal questionnaires and clinical assessments at baseline, after 1, 5, and 8 years. Depressive symptoms were measured with Geriatric Depression Scale and the results were classified into ND, SSD, and syndromal depression. Mortality was investigated using multivariable cox regressions, and variables of morbidity were investigated using linear mixed models. RESULTS: Compared to ND, in people with SSD, mortality was elevated in the univariate regression, but this association vanished when controlling for relevant covariates. Morbidity was elevated with regard to basic activities of daily living (ADLs), instrumental ADLs, loneliness, self-perceived health, and depressive symptoms for individuals with SSD compared to ND, whereas cognitive speed, executive functions, and global cognitive function were not significantly impaired when adjusting for covariates. CONCLUSIONS: SSD among very old individuals is longitudinally associated with elevated morbidity but not mortality, when controlling for relevant covariates. Considering the high prevalence of SSD and the demographic development of increasing numbers of very old people, the findings highlight the need to develop clinical and societal strategies to prevent SSD and associated negative outcomes.

Factors related to health-related quality of life in older people with multimorbidity and high health care consumption over a two-year period.

BACKGROUND: The prevalence of multimorbidity is increasing worldwide, and older people with multimorbidity are frequent users of health care services. Since multimorbidity has a significant negative impact on Health-related Quality of Life (HrQoL) and is more common in older age it would be expected that factors related to HrQoL in this group might have been thoroughly researched, but this is not the case. Furthermore, it is important to look at old people living at home, considering the shift from residential to home-based care. Therefore, we aim to investigate factors that are related to HrQoL in older people with multimorbidity and high health care consumption, living at home. METHODS: This is a secondary analysis of a RCT study conducted in a municipality in south-eastern Sweden. The study had a longitudinal design with a two-year follow-up period assessing HrQoL, symptom burden, activities of daily living, physical activity and depression. RESULTS: In total, 238 older people with multimorbidity and high health care consumption, living at home were included (mean age 82, 52% female). A multiple linear regression model including symptom burden, activities of daily living and depression as independent variables explained 64% of the HrQoL. Higher symptom burden, lower ability in activities of daily living and a higher degree of depression were negatively related to HrQoL. Depression at baseline and a change in symptom burden over a two-year period explained 28% of the change in HrQoL over a two-year period variability. A higher degree of depression at baseline and negative change in higher symptom burden were related to a decrease in HrQoL over a two-year period. CONCLUSION: In order to facilitate better delivery of appropriate health care to older people with high health care consumption living at home it is important to assess HrQoL, and HrQoL over time. Symptom burden, activities of daily living, depression and change in symptom burden over time are important indicators for HrQoL. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT01446757 , the trial was registered prospectively with the date of trial registration October 5th, 2011.

Can a single question about family members' sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death.

BACKGROUND: It has been recognised that more evidence about important aspects of family members' sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members' sense of security during palliative care, and iii) to evaluate if family members' sense of security during ongoing palliative care predicts well-being during bereavement. METHODS: Between September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patient's death (70%). They answered a single question regarding the family members' sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link). RESULTS: Sixteen variables were positively related to family members' sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members' mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members' perceived quality of life. Moreover, the family members' sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patient's death, e.g. psychological well-being, complicated grief symptoms, health related quality of life. CONCLUSIONS: The findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.

'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.

Direct Costs of Very Old Persons with Subsyndromal Depression: A 5-Year Prospective Study.

OBJECTIVES: This study aimed to compare, over a 5-year period, the prospective direct healthcare costs and service utilization of persons with subsyndromal depression (SSD) and non-depressive persons (ND), in a population of very old persons. A second aim was to develop a model that predicts direct healthcare costs in very old persons with SSD. DESIGN AND SETTING: A prospective population-based study was undertaken on 85-year-old persons in Sweden. MEASUREMENTS: Depressiveness was screened with the Geriatric Depression Scale at baseline and at 1-year follow-up, and the results were classified into ND, SSD, and syndromal depression. Data on individual healthcare costs and service use from a 5-year period were derived from national database registers. Direct costs were compared between categories using Mann-Whitney U tests, and a prediction model was identified with linear regression. RESULTS: For persons with SSD, the direct healthcare costs per month of survival exceeded those of persons with ND by a ratio 1.45 (€634 versus €436), a difference that was significant even after controlling for somatic multimorbidity. The final regression model consisted of five independent variables predicting direct healthcare costs: male sex, activities of daily living functions, loneliness, presence of SSD, and somatic multimorbidity. CONCLUSIONS: SSD among very old persons is associated with increased direct healthcare costs independently of somatic multimorbidity. The associations between SSD, somatic multimorbidity, and healthcare costs in the very old need to be analyzed further in order to better guide allocation of resources in health policy.

Differences in levels of albumin, ALT, AST, γ-GT and creatinine in frail, moderately healthy and healthy elderly individuals.

BACKGROUND: Reference intervals are widely used as decision tools, providing the physician with information about whether the analyte values indicate ongoing disease process. Reference intervals are generally based on individuals without diagnosed diseases or use of medication, which often excludes elderly. The aim of the study was to assess levels of albumin, alanine aminotransferase (ALT), aspartate aminotransferase (AST), creatinine and γ-glutamyl transferase (γ-GT) in frail, moderately healthy and healthy elderly indivuduals. METHODS: Blood samples were collected from individuals >80 years old, nursing home residents, in the Elderly in Linköping Screening Assessment and Nordic Reference Interval Project, a total of 569 individuals. They were divided into three cohorts: frail, moderately healthy and healthy, depending on cognitive and physical function. Albumin, ALT, AST, creatinine and γ-GT were analyzed using routine methods. RESULTS: Linear regression predicted factors for 34% of the variance in albumin were activities of daily living (ADL), gender, stroke and cancer. ADLs, gender and weight explained 15% of changes in ALT. For AST levels, ADLs, cancer and analgesics explained 5% of changes. Kidney disease, gender, Mini Mental State Examination (MMSE) and chronic obstructive pulmonary disease explained 25% of the variation in creatinine levels and MMSE explained three per cent of γ-GT variation. CONCLUSIONS: Because a group of people are at the same age, they should not be assessed the same way. To interpret results of laboratory tests in elderly is a complex task, where reference intervals are one part, but far from the only one, to take into consideration.

Attachment figures when death is approaching: a study applying attachment theory to adult patients' and family members' experiences during palliative home care.

PURPOSE: Attachment theory is currently receiving much attention in relation to how adults cope with severe illness. The study aims were using the experiences of patients and family members to explore attachment figures (a central concept within the theory) during palliative home care. METHODS: Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed using qualitative content analysis. RESULTS: Four types of attachment figures were identified: (i) family and friends, (ii) health care practitioners, (iii) pets and (iv) God. Both non-physical and physical contact with the attachment figures facilitated a sense of security. In addition, the patient/family members and their attachment figures were described by some as a "we", and when one part of the "we" felt insecure, this made the other also feel insecure. The patients' unstable and progressing illnesses constituted a threat to the patients' and family members' sense of security. The availability of the attachment figures made them feel secure, and they could then divert their attention from the patients' illnesses to other things in everyday life, e.g. socialising with family and friends. Some family members also had to cope with the loss of their own attachment figure, when the patient, who had previously been a source of security for them, was no longer able to offer protection and comfort due to the progression of the illness. CONCLUSION: Important aspects of attachment figures in the end-of-life context were identified, and their clinical implications will be discussed.

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.

Palliative care consultation team on acute wards-an intervention study with pre-post comparisons.

ᅟ: There is little evidence regarding primary healthcare team members' perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards. PURPOSE: This study aimed to study whether a PCCT can influence and change primary healthcare team members' perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards. METHODS: The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 year's intervention. A questionnaire was answered by all primary healthcare team members in three acute wards. RESULTS: A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues. CONCLUSION: It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for.

Experiences and own management regarding residual symptoms among people with coeliac disease.

CONTEXT: Between 7% and 30% of people with treated coeliac disease suffer from residual symptoms, and there is a knowledge gap about their own management of these symptoms. AIM: To explore experiences and management concerning residual symptoms despite a gluten-free diet in people with coeliac disease. METHODS: A qualitative explorative design with semi-structured interviews with 22 adults with coeliac disease in Sweden. Data were analysed using qualitative content analysis. RESULTS: The informants had, at diagnosis, thought that their symptoms would disappear if they followed a gluten-free diet, but the disease was continuing to have a substantial impact on their lives, despite several years of treatment. They experienced cognitive, somatic as well as mental symptoms, including impact on personality (e.g. having a "shorter fuse", being more miserable or tired). However, only a few informants had sought medical care for persistent symptoms. Instead they tried to manage these by themselves, e.g. abstaining from food during periods of more intense symptom, or using distraction. The management of persistent symptoms resembled thorough detective work. To prevent problems related to residual symptoms the informants used withdrawal of social contact as well as acceptance of their situation. CONCLUSION: People with treated coeliac disease may experience residual symptoms of both a physical and psychological nature, causing major negative impacts on their lives in different ways. In the light of this, healthcare staff should change their practices regarding the follow-up of these people, and in addition to medical care should provide guidance on management strategies to facilitate the daily life. Furthermore, information to newly diagnosed persons should make them aware of the possibility to experience continued symptoms, despite treatment.