BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce.
METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals.
CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed.
TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.
BACKGROUND: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.
METHODS: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.
RESULTS: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes.
CONCLUSION: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals.
TRIAL REGISTRATION NUMBER: NCT03466580.
One more chemo or one too many? The increasing use of expensive cancer treatments close to the patient's death is often explained by oncologists' failure to communicate to patients how close to dying they are, implying that patients are often both ill-prepared and over-treated when they die. This article aims at interrogating the politically charged task of prognosticating. Drawing on an ethnographic study of conversations between oncologists and patients with metastatic lung cancer in a Danish oncology clinic, I show that oncologists utilize, rather than avoid, prognostication in their negotiations with patients about treatment withdrawal. The study informs the emerging sociology of prognosis in three ways: First, prognostication is not only about foreseeing and foretelling, but also about shaping the patient's process of dying. Second, oncologists prognosticate differently depending on the level of certainty about the patient's trajectory. To unfold these differences, the article provides a terminology that distinguishes between four 'modes of prognostication', namely hinting, informing, calibrating and organizing. Third, prognosticating can unfold over time through multiple consultations, emphasizing the relevance of adopting methodologies enabling the study of prognosticating over time.
BACKGROUND: The marketing authorisation for many injectable drugs used in palliative care does not cover the frequently preferred subcutaneous route. Consequently, subcutaneous off-label drug administration is often practised.
AIM: To assess the use, safety and tolerability of subcutaneous label and subcutaneous off-label drug administration in a Danish hospice.
MATERIAL AND METHODS: Retrospective data from hospice inpatient records registered with subcutaneous drug administration. Prospective data of subcutaneous drug administration registered to hospice inpatients over a period of 2 months.
RESULTS: Drugs were administered subcutaneously to 90% of patients in both studied cohorts. Thirty different drugs were administered subcutaneously. Ten (33%) drugs were authorised for subcutaneous administration, 14 (47%) for intramuscular and 6 (20%) for intravenous administration only. A search in major palliative literature and scientific publications revealed that 11 of the 20 subcutaneous off-labelled drugs were administered with little to no support from these sources. In seven patients, 11 adverse drug reactions (ADRs) were registered. ADRs were all minor local reactions and led to drug discontinuation in two patients only.
CONCLUSION: Subcutaneous drug administration was frequently used in the hospice. Two-thirds of the drugs were administered subcutaneously off-label. The findings of only a few and minor ADRs indicate that the drugs identified in this study, although often subcutaneously off-label and with little support from palliative literature, were administered with acceptable safety and tolerability. Off-label treatment practised in the clinic should be identified, reported and serve as inspiration for future scientific research and incentives for extension of marketing authorisations.
BACKGROUND: Patients with end-stage kidney disease (ESKD) may have palliative care needs. A tool validated in a Danish context to identify such needs is lacking. The Integrated Palliative Outcome Scale-Renal (IPOS-Renal) aims to identify patients' palliative care needs. The current study is the first phase of a research project translating and validating the IPOS-Renal into Danish.
OBJECTIVES: To investigate palliative care needs among Danish patients with ESKD.
DESIGN: A literature review was conducted using meta-ethnography inspired by Noblit and Hare. A focus group with health care professionals (HCPs) and semi-structured individual patient interviews were conducted and analysed using Malterud's principles of systematic text condensation.
RESULTS: A synthesis of 15 studies, a focus group with 13 HCPs, and interviews with nine patients were conducted. We found that patients with ESKD experienced several symptoms related to physical, social, mental and existential and practical needs. The most prominent findings were fatigue, reduced physical functioning, dizziness, impaired memory, dependency on relatives or HCPs, social isolation and loss of identity.
CONCLUSION: The palliative care needs identified in the Danish patient population are substantiated by the IPOS-Renal questionnaire. However, some Danish patients also appear to struggle with dizziness and impaired memory. These symptoms do not appear specifically in the IPOS-Renal questionnaire but may have to be included in a Danish version.
Background: To investigate the use of do-not-resuscitate (DNR) orders in patients hospitalized with community-acquired pneumonia (CAP) and the association with mortality.
Methods: We assembled a cohort of 1317 adults hospitalized with radiographically confirmed CAP in three Danish hospitals. Patients were grouped into no DNR order, early DNR order (=48 h after admission), and late DNR order (> 48 h after admission). We tested for associations between a DNR order and mortality using a cox proportional hazard model adjusted for patient and disease related factors.
Results: Among 1317 patients 177 (13%) patients received a DNR order: 107 (8%) early and 70 (5%) late, during admission. Patients with a DNR order were older (82 years vs. 70 years, p < 0.001), more frequently nursing home residents (41% vs. 6%, p < 0.001) and had more comorbidities (one or more comorbidities: 73% vs. 59%, p < 0.001). The 30-day mortality was 62% and 4% in patients with and without a DNR order, respectively. DNR orders were associated with increased risk of 30-day mortality after adjustment for age, nursing home residency and comorbidities. The association was modified by the CURB-65 score Hazard ratio (HR) 39.3 (95% CI 13.9–110.6), HR 24.0 (95% CI 11.9–48,3) and HR 9.4 (95% CI: 4.7–18.6) for CURB-65 score 0–1, 2 and 3–5, respectively.
Conclusion: In this representative Danish cohort, 13% of patients hospitalized with CAP received a DNR order. DNR orders were associated with higher mortality after adjustment for clinical risk factors. Thus, we encourage researcher to take DNR orders into account as potential confounder when reporting CAP associated mortality.
INTRODUCTION: An interdisciplinary team approach to patients in specialised palliative care is recommended; however, the composition of the professionals tends to vary, and the roles of physiotherapists and occupational therapists may be underestimated. We aimed to investigate patient-reported unmet needs, which potentially could benefit from physiotherapy and occupational therapy interventions in a specialised palliative care team.
METHODS: Adult patients with chronic advanced diseases referred to the Specialised Palliative Care Team at Copenhagen University Hospital, Rigshospitalet were enrolled in the study. The Three-Levels-of-Needs Questionnaire was used as primary outcome to assess symptom/problem intensity, symptom/problem burden and felt needs for 12 commonly reported symptoms/problems for patients referred to a specialised palliative care team. Furthermore, participants' level of distress, fatigue and physical activity, symptoms of anxiety and depression, and barriers towards the rehabilitation programme were registered with other measures.
RESULTS: In total, 43 of 67 (64%) patients participated. The majority of participants reported severe symptoms/problems concerning fatigue (81%), impaired physical activities (77%), carrying out work and daily activities (77%), pain (72%), and worries (58%). Furthermore, need for help was expressed concerning physical activities (79%), work and daily activities (77%), fatigue (70%), pain (65%), concentration (58%) and worries (51%). On average the patients characterised 6 (out of 12) symptoms/problems as severe.
CONCLUSION: Patients referred to a specialised palliative care team reported extensive unmet needs concerning physical activities, work and daily activities, fatigue, pain, concentration and worries. Unmet needs that potentially could be alleviated by physiotherapists or occupational therapists implemented in the interdisciplinary team.
Background: The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking.
Aim: To describe physical and mental health status in caregivers of patients at the end of life, and to investigate whether caregivers’ health status during caregiving predict prolonged grief disorder.
Design: A population-based prospective survey was conducted. Health status was measured in caregivers during caregiving (SF-36), and prolonged grief disorder was assessed 6 months after bereavement (Prolonged Grief-13). We calculated mean scores of health status and explored the association with prolonged grief disorder using logistic regression adjusted for age, gender and education.
Setting/participants: The health in caregivers of patients granted drug reimbursement due to terminal illness in Denmark in 2012 was assessed during caregiving and 6 months after bereavement (n = 2125).
Results: The SF-36 subscale ‘role-physical’ concerning role limitations due to physical health, the ‘mental health’ component score, and all ‘mental health’ subscales showed significantly worse health in the participants than in the general population. Both poor physical health (adjusted OR: 1.05 (95% CI: 1.04–1.07)) and poor mental health (adjusted OR: 1.09 (95% CI: 1.07–1.11)) predicted prolonged grief disorder.
Conclusion: Caregivers scored lower on one physical subscale and all mental health measures than the general population. Prolonged grief disorder was predicted by poor physical and mental health status before bereavement. Future research is needed on the use of health status in systematic assessment to identify caregivers in need of support.
PURPOSE: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008).
METHODS: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative.
RESULTS: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement.
CONCLUSION: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions.
BACKGROUND: Dignity is an inherent value in palliative care, but understanding dignity among people living with and hospitalized for incurable esophageal cancer has not been explored.
OBJECTIVE: The aim of this study was to empirically explore the meaning of dignity in people hospitalized with incurable esophageal cancer.
METHODS: A qualitative hermeneutic approach, inspired by Gadamer, guided the research process and interpretation of the transcribed interviews. Eighteen patients participated in the study.
RESULTS: The meaning of dignity was revealed as reverential response in care relationships and eating as an undignifying activity. A balance of the healthcare system's framework with the lifeworld of the patient was significant in preserving dignity and gave patients a sense of reverent response. Patients were unable to eat ordinary daily meals, which affected their perception of own body and identity, including interactions with others. The resulting bodily changes and social consequences were of crucial importance to the perceived dignity.
CONCLUSIONS: A dialogical and understanding approach is significant in making the patient feel worthy, consequently helping to uphold a sense of dignity. The changing and decaying body due to eating difficulties bears witness to illness, altering the individual's sense of self, in turn threatening the dignity of identity.
IMPLICATION FOR PRACTICE: The care should be based on a reverential response based on the patients' lifeworld. In doing so, storytelling might be a way. Palliative care for these people needs to stress that patients share other aspects of life that is not totally dominated by their illness, inability to eat, and unrecognizable body.
OBJECTIVES: End-of-life hospitalisations may not be associated with improved quality of life. Studies indicate differences in end-of-life care for cancer and non-cancer patients; however, data on hospital utilisation are sparse. This study aimed to compare end-of-life hospitalisation and place of death among patients dying from cancer, heart failure or chronic obstructive pulmonary disease (COPD).
DESIGN: A nationwide register-based cohort study.
SETTING: Data on all in-hospital admissions obtained from nationwide Danish medical registries.
PARTICIPANTS: All decedents dying from cancer, heart failure or COPD disease in Denmark between 2006 and 2015.
OUTCOME MEASURES: Data on all in-hospital admissions within 6 months and 30 days before death as well as place of death. Comparisons were made according to cause of death while adjusting for age, sex, comorbidity, partner status and residential region.
RESULTS: Among 154 235 decedents, the median total bed days in hospital within 6 months before death was 19 days for cancer patients, 10 days for patients with heart failure and 11 days for patients with COPD. Within 30 days before death, this was 9 days for cancer patients, and 6 days for patients with heart failure and COPD. Compared with cancer patients, the adjusted relative bed day use was 0.65 (95% CI, 0.63 to 0.68) for heart failure patients and 0.68 (95% CI, 0.66 to 0.69) for patients with COPD within 6 months before death. Correspondingly, this was 0.65 (95% CI, 0.63 to 0.68) and 0.70 (95% CI, 0.68 to 0.71) within 30 days before death.Patients had almost the same risk of dying in hospital independently of death cause (46.2% to 56.0%).
CONCLUSION: Patients with cancer, heart failure and COPD all spent considerable part of their end of life in hospital. Hospital use was highest among cancer patients; however, absolute differences were small.
Through a systematic review and meta-analyses, we aimed to determine predictors for place of death among children. We searched online databases for studies published between 2008 and 2019 comprising original quantitative data on predictors for place of death among children. Data regarding study design, population characteristics and results were extracted from each study. Meta-analyses were conducted using generic inverse variance method with random effects. Fourteen cohort studies met the inclusion criteria, comprising data on 106,788 decedents. Proportions of home death varied between countries and regions from 7% to 45%. Lower age was associated with higher odds of hospital death in eight studies (meta-analysis was not possible). Children categorised as non-white were less likely to die at home compared to white (pooled OR 0.6; 95% CI 0.5-0.7) as were children of low socio-economic position versus high (pooled OR 0.7; 95% CI 0.6-0.9). Compared to patients with cancer, children with non-cancer diagnoses had lower odds of home death (pooled OR 0.5; 95% CI 0.5-0.5).
Conclusion: Country and region of residence, older age of the child, high socio-economic position, 'white' ethnicity and cancer diagnoses appear to be independent predictors of home death among children.
What is Known: ; Home is often considered an indicator of quality in end-of-life care. ; Most terminally ill children die in hospitals.
What is New: ; Through a systematic review and meta-analyses, this study examined predictors for place of death among children. ; Country and region of residence, older age of the child, high socio-economic position, white ethnicity and having a cancer diagnosis appear to be independent predictors of home death among terminally ill children.
BACKGROUND: The Cancer Home-Life Intervention showed no significant effects, and examination of the processes affecting or inhibiting outcomes is relevant.
AIM: To evaluate the Cancer Home-Life Intervention for its processes of implementation, mechanisms of impact and contextual factors.
DESIGN: Process evaluation conducted alongside the randomised controlled trial, using quantitative and qualitative methods (ClinicalTrials.gov NCT02356627). The Cancer Home-Life Intervention is a tailored, occupational therapy-based programme.
SETTING/PARTICIPANTS: This study took place in participants' homes and at hospital. A total of 113 home-dwelling adults (>=18 years) with advanced cancer who had received the Cancer Home-Life Intervention were included, together with five intervention-therapists.
RESULTS: All 113 participants (100%) received a first home visit; 32 participants (26%) received a second visit; and 4 participants (3%) received a third visit. Median number of delivered intervention components were 3 (interquartile range: 2; 4). Identified barriers for effect included unclear decision process for intervention dosage; participants' low expectations; participants' lack of energy; and insufficient time to adopt new strategies. The trial design constituted a barrier as the intervention could only be provided within a specific short period of time and not when relevant. Intervention components working to solve practical everyday problems, enhance enjoyment and increase a sense of safety were perceived as useful.
CONCLUSION: Future interventions can benefit from inclusion criteria closely related to the intervention focus and clear procedures for when to continue, follow-up and terminate intervention. Decisions about dose and timing may benefit from learning theory by taking into account the time and practice needed to acquire new skills.
Background: It is important to understand the total burden of COPD and thereby be able to identify patients who need more intensive palliative care to avoid deteriorated quality of life. The aim of this study was to describe the psychosocial and demographic characteristics of a population with advanced COPD in a stable phase of the disease.
Methods: This study was cross-sectional based on a prospective observational cohort. The following questionnaires were administered: Chronic Respiratory Disease Questionnaire (CRQ), The COPD Assessment Test (CAT), The Hospital and Anxiety and Depression Scale (HADS), The Medical Research Council dyspnoea scale (MRC), and self-rate general health.
Results: We included 242 patients with advanced COPD from a Danish pulmonary outpatient clinic. Their mean FEV1 was 38% (±12.7) and 19% were treated with long term oxygen. The mean CRQ domain score was CRQ-dyspnea 4.21 (±1.4), CRQ-Mastery 4.88 (±1.3), CRQ-Emotional 4.81 (±1.2), CRQ-Fatigue 3.93 (±1.3). The mean CAT-score was 18.4 (± 6.7), and 44% had a CAT score > 20. The mean score on the subscale for anxiety (HADS-A) and depression (HADS-D) was 5.07 (±3.9) and 5.77 (±3.9), respectively. Thirty percent self-rated their health as bad or very bad and 19.8% were current smokers.
Conclusions: This study describes the characteristics of a population with advanced COPD in a stable phase of their disease. Our results illustrate how the population although treated in an outpatient structure already focusing on palliative needs, still live with unmet palliative needs and impaired quality of life.
Background: Previous studies suggest that the symptomatology threshold (i.e. the level and types of symptoms) for a referral to specialized palliative care might differ for doctors in different parts of the healthcare system; however, it has not yet been investigated.
Aim: To investigate if the number and level of symptoms/problems differed for patients referred from the primary and secondary healthcare sectors (i.e. general practitioner versus hospital physician).
Setting/participants: Adult cancer patients registered in the Danish Palliative Care Database who reported their symptoms/problems at admittance to specialized palliative care between 2010 and 2017 were included. Ordinal logistic regression analyses were performed with each symptom/problem as outcome to study the association between referral sector and symptoms/problems, controlled for the effect of gender, age, cancer diagnosis and the specialized palliative care service referred to.
Results: The study included 31,139 patients. The average age was 69 years and 49% were women. Clinically neglectable associations were found between referral sector and pain, appetite loss, fatigue, number of symptoms/problems, number of severe symptoms/problems (odds ratios between 1.05 and 1.20, all p < 0.05) and physical functioning (odds ratio = 0.81 (inpatient care) and 1.32 (outpatient), both p < 0.05). The remaining six outcomes were not significantly associated with referral sector.
Conclusion: Differences across healthcare sectors in, for example, competences and patient population did not seem to result in different symptomatology thresholds for referring patients to palliative care since only small, and probably not clinically relevant, differences in symptomatology was found across referral sectors.
Introduction: Patients with chronic obstructive pulmonary disease and interstitial lung disease have a significant burden of symptoms. Many are not offered palliative care (PC). Our aim was to investigate the attitudes to and barriers for PC among physicians.
Method: A web-based survey was conducted among members of the Danish Respiratory Society. The questionnaire included contextual (gender, age, clinical experience, type of center, patient caseload) and outcome questions (knowledge and use of statements for PC and advance care planning [ACP], practice of communication about end-of-life decisions, practice for referral to PC, barriers regarding structural surroundings, clinical skills, and organization).
Results: One hundred fifty-six (45%) physicians responded. Median age was 40 - 49 years and 55% were female. Fifty-two percent were specialists; 71% worked at a university hospital. The majority of physicians (60%) reported barriers for discussions about PC and ACP; 63% reported lack of time, 52% lack of multidisciplinary staff settings, 63% reported the unpredictability of the prognosis, and 20% insufficient awareness of patient's culture, religion, or spirituality. Fewer specialists than nonspecialists reported barriers toward ACP. The majority had knowledge of guidelines in PC and ACP, but only a minority used these in daily clinical practice.
Conclusion: The attitude toward PC and ACP conversations was positive and implementation was regarded as important, but only a minority performed these conversations in practice. Main barriers were lack of time and staff. Palliative care guidelines were known but only scarcely used. Structural changes at the organizational level to improve access to palliation for patients with nonmalignant chronic lung diseases are needed.
Background: There is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs). No study has investigated if it was best to include or exclude data from services with low response rates in order to obtain the patient reported outcomes most representative of the national palliative care population. Thus, the aim of this study was to investigate whether services with low response rates should be excluded from analyses to prevent effects of possible selection bias.
Methods: Data from the Danish Palliative Care Database from 24,589 specialized palliative care admittances of cancer patients was included. Patients reported ten aspects of quality of life using the EORTC QLQ-C15-PAL-questionnaire. Multiple linear regression was performed to test if response rate was associated with the ten aspects of quality of life.
Results: The score of six quality of life aspects were significantly associated with response rate. However, in only two cases patients from specialized palliative care services with lower response rates (< 20.0%, 20.0–29.9%, 30.0–39.9%, 40.0–49.9% or 50.0–59.9) were feeling better than patients from services with high response rates (=60%) and in both cases it was less than 2 points on a 0–100 scale.
Conclusions: The study hypothesis, that patients from specialized palliative care services with lower response rates were reporting better quality of life than those from specialized palliative care services with high response rates, was not supported. This suggests that there is no reason to exclude data from specialized palliative care services with low response rates.
BACKGROUND: Safeguarding the dignity of patients at the end of life is a key objective in palliative care practice in Denmark. The concept of dignity and how it influences a dying persons' quality of life is thus influential in end-of-life care at hospices. However, what is meant by dignity, how dignity is understood and practiced by healthcare professionals in Danish hospices, and whether this relates to the patients' understandings and needs concerning dignity remains unanswered.
AIM: The aim of this study was to explore and improve dignity in care through an action research study with patients and hospice staff at two different hospices in Denmark. This was done by exploring how patients and healthcare professionals expressed their understandings and needs concerning dignity and involving participants in the research process with the goal of improving dignity in care.
METHODS: An action research method with reflection-of-praxis and action-in-praxis was applied. It was combined with methods of semi-structured individual interviews with twelve patients, five staff and nine focus-group interviews with staff.
RESULTS: Three themes emerged from the analysis of data. The themes were as follows: (1) being understood, (2) contributing and (3) holistic care. Deeper analysis indicated that staff understandings of dignity mostly focused on preserving patients' autonomy, whereas patients expressed needs for relational and spiritual aspects of dignity. Staff were mostly concerned about preserving patients' autonomy when providing dignity in care, however, through the action-in-praxis they increased their awareness on their own praxis and patients' needs and understanding concerning dignity. The theoretical model on dignity presented in the study also worked as a map to guide staffs' reflections on dignity in praxis and facilitated a broader focus on supporting and caring for patients' dignity in care. We believe this study has improved dignity in care at the two hospices involved in the study.
According to the World Health Organization, palliative care must be available for everyone with life-threatening diseases. However, in daily practice the primary focus worldwide is on cancer patients. The aim of the article was to generate a national position statement as the first step in implementing palliative care in severe heart disease with focus on advanced heart failure, including tools to identify the need for and timing of palliative care and how palliative care could be organized in Denmark. A task force was formed in the Danish Society of Cardiology Heart Failure Working Group, and the position statement was prepared in collaboration with members from a broad group of specialties, including palliative medicine. Because of major gaps in evidence, the position statement was based on small and low-quality studies and clinical practice statements. This position statement was aligned with the European Society of Cardiology recommendation, focusing on relieving suffering from the early disease stages parallel to standard care and supplementing life-prolonging treatment. The statement delivers practical guidance on clinical aspects and managing symptoms during the three stages of advanced heart disease. Furthermore, the statement describes the importance of communication and topics to be broached, including deactivating implantable cardioverter defibrillators. The statement recommends a targeted effort on organizational strategies using high-quality assessment tools and emphasizes multidisciplinary and intersectoral collaboration. Danish cardiologists supported by allied professionals acknowledge the importance of palliative care in advanced heart disease. This national position statement intended to inform and influence policy and practice and can hopefully inspire other countries to take action toward implementing palliative care in advanced heart disease.
Background: Few studies have investigated the content of interventions provided in early specialised palliative care (SPC).
Objectives: To characterise the content of interventions delivered in early SPC in the Danish Palliative Care Trial (DanPaCT), a multicentre trial with six participating sites.
Methods: A retrospective qualitative and quantitative study coding all new interventions initiated by the palliative teams and documented in the medical records during the 8-week study period of DanPaCT. Interventions were categorised according to (a) symptom/problem prompting the intervention, (b) type of intervention and (c) professional(s) providing the intervention.
Results: In total, 145 patients were randomised to the SPC teams. According to the medical records, patients received a median of 3.5 (range 0–22) new interventions in the 8-week intervention-period from the palliative teams. For 24 (18%) of the patients there was no documented interventions in the medical records. The most frequent symptom/problems treated were pain, (100 interventions; 20% of interventions given) and impaired physical function (62; 13% of interventions given). The most frequent type of intervention was pharmacological (232; 42% of interventions given).
Conclusions: This is one of the first studies to meticulously investigate the content of interventions documented in the medical records for patients receiving early SPC. Diverse symptoms were treated with many different interventions. However, a relatively low number of interventions were documented. This may explain the lack of effect in DanPaCT but also questions whether all interventions were adequately documented
Trial registration number: NCT01348048