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
Purpose: Do-not-resuscitate (DNR) decision-making in severely ill patients presents many difficult medical, ethical, and legal challenges. The primary aim of this study was to explore cancer patients’ and health care professionals’ attitudes regarding DNR decision-making authority and timing of the decision.
Methods: This study was a questionnaire survey among Danish cancer patients and their attending physicians and nurses in an oncology outpatient setting. Potential differences between patients’, physicians’, and nurses’ answers to the questionnaire were analyzed using Fisher’s exact test.
Results: Responses from 904 patients, 59 physicians, and 160 nurses were analyzed. The majority in all three groups agreed that DNR decisions should be made in collaboration between physician and patient. However, one-third of the patients answered that the patient alone should make the decision regarding DNR, which contrasts with the physicians’ and nurses’ attitudes, 0% and 6% pointing to the patient as sole decision-maker, respectively. In case of disagreement between patient and physician, a majority of both patients (66%) and physicians (86%) suggested themselves as the ultimate decision-maker. Additionally, 43% of patients but only 19% of physicians preferred the DNR discussion being brought up early in the course of the disease.
Conclusions: With regard to the decisional role of patient vs. physician and the timing of the DNR discussion, we found a substantial discrepancy between the attitudes of cancer patients and physicians. This discrepancy calls for a greater awareness and discussion of this sensitive topic among both health care professionals and the public.
Background: Large, nationally representative studies of the association between quality of life and survival time in cancer patients in specialized palliative care are missing.
Aim: The aim of this study was to investigate whether symptoms/problems at admission to specialized palliative care were associated with survival and if the symptoms/problems may improve prediction of death within 1 week and 1 month, respectively.
Setting/participants: All cancer patients who had filled in the EORTC QLQ-C15-PAL at admission to specialized palliative care in Denmark in 2010–2017 were included through the Danish Palliative Care Database. Cox regression was used to identify clinical variables (gender, age, type of contact (inpatient vs outpatient), and cancer site) and symptoms/problems significantly associated with survival. To test whether symptoms/problems improved survival predictions, the overall accuracy (area under the receiver operating characteristic curve) for different prediction models was compared. The validity of the prediction models was tested with data on 5,508 patients admitted to palliative care in 2018.
Results: The study included 30,969 patients with an average age of 68.9 years; 50% were women. Gender, age, type of contact, cancer site, and most symptoms/problems were significantly associated with survival time. The predictive value of symptoms/problems was trivial except for physical function, which clearly improved the overall accuracy for 1-week and 1-month predictions of death when added to models including only clinical variables.
Conclusion: Most symptoms/problems were significantly associated with survival and mainly physical function improved predictions of death. Interestingly, the predictive value of physical function was the same as all clinical variables combined (in hospice) or even higher (in palliative care teams).
We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.
The aim of this research is to investigate death anxiety of the people who live in Turkey and Denmark and have the same cultural background. Cross-cultural studies about death anxiety have been conducted within two different cultures. The goal is to fill the gap in the literature. In this context, participants’ self-esteem and personality traits were also investigated. Death Anxiety Scale, Rosenberg Self-Esteem Scale, and The Big Five Inventory were used in this study. Seventy-four people from Turkey and 67 from Denmark participated in this research. According to the results, people who live in Turkey have more death anxiety. There is negative correlation between self-esteem and death anxiety. Neuroticism of the personality traits has positive correlation with death anxiety.
AIM: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014.
METHODS: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases.
RESULTS: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased.
CONCLUSION: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
BACKGROUND: Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD).
AIM: The aim of this study was to examine possible differences between pragmatic and ideal preferences of terminally ill patients, as well as differences between asking patients about preferences concerning PoC and PoD.
METHODS: Structured interviews were performed with terminally ill cancer patients at inclusion and a follow-up questionnaire was completed 1 month later. Answers were compared using kappa (k) statistics and Pearson's c2-test.
RESULTS: Among 96 cancer patients, agreement between pragmatic and ideal preferences was statistically significantly different (p=<0.001). Agreement between preferences for PoC and PoD was high (k:0.76-0.85).
CONCLUSION: Differences exist between pragmatic and ideal EoL preferences, whereas preferences for PoC and PoD were found to be similar. These findings highlight the importance of the phrasing of questions when uncovering patients' preferences for EoL care.
What might the good life amount to at the margins of life? Taking our point of departure in Jonathan Lear’s notions of ontological breakdown and radical hope as well as the phenomenology of lived time, we explore hope within the institutional aging process in Denmark. Drawing on two ethnographic cases, Vagn and Thea, we propose a phenomenological and responsive hope emerging within complex temporalities. This is a relational hope to be included among the living, to be a human being among others. Importantly, it is neither optimistic nor naive but rather hope practiced in the face of devastating life circumstances.
This chapter looks at stillbirth registration and levels of stillbirth mortality in 19th century Iceland from a Nordic comparative perspective....
In the first part I compare regulations on stillbirth registation and collection on statistics in Iceland with Danemark. The second part discusses the development of stillbirth mortality in both countries. This section also includes a comparison with Sweden.
This cross-sectional survey compares the risk of mental health problems like poor well-being, complicated and prolonged grief, and mental disorders between young adults experiencing a divorced or non-divorced parent’s death. 190 participants were recruited from Facebook via the Danish National Center for Grief. Well-being was measured using WHO-5, prolonged grief using PG-13 and complicated grief using BGQ, and common mental disorders using CMDQ. Findings confirmed deleterious effects on mental health in young adults experiencing parental death, but higher risk, when losing a divorced parent compared to a non-divorced parent, was associated to prolonged grief, complicated grief, bodily distress syndrome, and alcohol misuse.
BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials.
OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT).
METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve.
RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item ‘overall satisfaction with the help received from the health care system’ with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05).
CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group.
TRIAL REGISTRATION: NCT01348048.