Palliative care need screening and specialised referrals fell during the COVID-19 pandemic: a nationwide register-based study.

OBJECTIVES: Few studies have examined whether access to, and quality of, specialised palliative care changed during the COVID-19 pandemic. This study investigated changes in access to and quality of specialised palliative care during the pandemic in Denmark compared to previously. METHODS: An observational study using data from the Danish Palliative Care Database combined with other nationwide registries was conducted, including 69 696 patients referred to palliative care services in Denmark from 2018 to 2022. Study outcomes included number of referrals and admissions to palliative care, and the proportions of patients fulfilling four palliative care quality indicators. The indicators assessed admissions among referred, waiting time from referral to admission, symptom screening using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) questionnaire at admission, and discussion at multidisciplinary conference. Logistic regression analysed whether the probability of fulfilling each indicator differed between the pandemic period and pre-pandemic, while adjusting for possible confounders. RESULT: Number of referrals and admissions to specialised palliative care were lower during the pandemic. The odds for being admitted within 10 days of referral was higher during the pandemic (OR: 1.38; 95% CI: 1.32 to 1.45) whereas the odds for answering the EORTC questionnaire (0.88; 95% CI: 0.85 to 0.92) and for being discussed at multidisciplinary conference (0.93; 95% CI: 0.89 to 0.97) were lower compared with pre-pandemic. CONCLUSIONS: Fewer patients were referred to specialised palliative care during the pandemic, and fewer were screened for palliative care needs. In future pandemics or similar scenarios, it is important to pay special attention to referral rates and to maintain the same high level of specialised palliative care.

Increased rate of home-death among patients in a Danish general practice.

INTRODUCTION: Most terminally ill patients wish to die at home. The aim of this study was to investigate whether the home-death rate was higher than the Danish average in a general practice with a systematic approach to palliative care and to examine if the number of clinical contacts between the practice and its patients was associated with place of death. METHODS: In a large (6,500 patients) four-doctor general practice outside of Copenhagen, adult patients who died between 2015 and 2018 were identified. Accidental or suicidal deaths were excluded. Data on age, gender, diagnosis, place of death, the primarily responsible physician and the number of clinical contacts during the last four months of life were retrieved from the patients' medical files. RESULTS: A total of 201 patients were included (mean age at time of death = 82.4 years) of whom 99 patients (49%) died at home/in a nursing home and 93 patients (46%) died in hospital/hospice. Compared with regional data, the proportion of home-death was higher in the study population (national (43%, p = 0.09), regional (39%, p = 0.01), municipal (44%, p = 0.18)). The odds of death in hospital were nine times higher if no GP was directly involved in the palliative phase (p = 0.001). However, no significant difference in the number of contacts with the GP between patients who died at home or in hospital/hospice was observed. CONCLUSIONS: The proportion of home-death in the studied general practice was higher than home-death recorded in regional data. Having a GP involved in the palliative phase was associated with home-death independently of the number of GP contacts in the trajectory. FUNDING: The study received funding from the PLU-Fund (Praktiserende Lægers Uddannelsesfond). TRIAL REGISTRATION: not relevant.

Grief symptoms and primary care use: a prospective study of family caregivers.

BACKGROUND: Family caregivers to patients who are severely ill have high use of primary health care and psychotropic medication. However, it remains sparsely investigated whether healthcare services target the most vulnerable caregivers. AIM: This study aimed to examine associations between family caregivers' grief trajectories of persistent high-grief symptom level (high-grief trajectory) versus persistent low-grief symptom level (low-grief trajectory), as well as early contacts with GPs or psychologists and the use of psychotropic medication. DESIGN & SETTING: A population-based cohort study of family caregivers (n = 1735) in Denmark was undertaken. METHOD: The Prolonged Grief-13 (PG-13) scale measured family caregivers' grief symptoms at inclusion (during the patient's terminal illness), 6 months after bereavement, and 3 years after bereavement. Multinomial regression was used to analyse register-based information on GP consultations, psychologist sessions, and psychotropic medication prescriptions in the 6 months before inclusion. RESULTS: A total of 1447 (83.4%) family caregivers contacted their GP, and 91.6% of participants in the high-grief trajectory had GP contact. Compared with family caregivers in the low-grief trajectory, family caregivers in the high-grief trajectory had ≥4 face-to-face GP consultations (odds ratio [OR] = 2.6; 95% confidence interval [CI] = 1.3 to 5.0), more GP talk therapy (OR =4.4; 95% CI = 1.9 to 10.0), and more psychotropic medication, but not significantly more psychologist sessions (OR = 1.7; 95% CI = 0.5 to 6.6). CONCLUSION: Family caregivers in the high-grief trajectory had more contact with their GP, but their persisting grief symptoms suggest that primary care interventions for family caregivers should be optimised. Future research is warranted in such interventions and in the referral patterns to specialised mental health care.

[Life-threatening illness and the decision to resuscitate or not].

Current Danish guidance stipulates, that the physician responsible for treatment must assess, if resuscitation is medically indicated in patients with life-threatening illness. Nevertheless, terminally ill patients without medical indication for resuscitation are still asked about preferences for resuscitation rather than informed about the decision not to resuscitate. This review describes clinical dilemmas, which may arise, if these legal rights are misinterpreted. It provides a communication guide designed to assist physicians communicating with patients about the decision to resuscitate or not.

The First Steps Taken to Implement Palliative Care in Advanced Heart Disease: A Position Statement from Denmark.

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.

[Integration af specialiseret palliation og onkologi].

Palliative care (PC) is an approach, which improves the quality of life (QoL) of patients and their families facing problems associated with life-threatening illness. Hospital-based specialised PC alongside cancer treatment shows better symptom management, QoL, satisfaction with care, and less psychological distress. Strong recommendations have been given to integrate PC and cancer care. Systematic screening of symptoms and needs, use of standardised care pathways, better competencies in PC at all levels, more research and palliative medicine as a new speciality in Denmark are future perspectives.

[Pain in the dying patient].

Pain is one of the most frequent symptoms in patients with advanced chronic illnesses. However, knowledge of prevalence and intensity of pain in the last days of life is poor. This review shows that more than half of patients who are dying from either cancer or non-malignant diseases experience pain, but only very few patients have unbearable pain. More knowledge of pain in the last days of life is needed, and teaching symptom management in the dying patient ought to be compulsory at the medical schools in Denmark.

[Care and treatment can be planned in advance with advance care planning].

Advance care planning (ACP) is a discussion between an incurably ill patient, a healthcare professional and if possible, a relative about preferences for end-of-life care, and ACP may improve the communication in this situation. However, in the Danish healthcare system there is no formalized and systematically used standard procedure for discussions with patients about their knowledge of their treatment options, values and preferences. In this article we review the concept of ACP, including definition, experiences from abroad and the status of ACP in Denmark.

The diverse impact of advance care planning: a long-term follow-up study on patients' and relatives' experiences.

BACKGROUND: Advance care planning (ACP) is a process of discussing and recording patients' preferences for future care, aiming to guide healthcare decisions at the end of life (EOL). AIM: To explore nuances in the long-term impact of ACP by studying patient and relative experiences. DESIGN: A qualitative follow-up interview study. Interviews were recorded, transcribed and analysed using thematic synthesis. SETTING/PARTICIPANTS: 3 patients with a life-limiting disease (lung or heart disease), affiliated with a major Danish hospital, and 7 relatives were interviewed 1 year after participating in an ACP discussion. RESULTS: The experiences were diverse. Some patients and relatives felt 'relieved', 'more secure' and more in control due to ACP. To some, ACP had led to open communication rather than 'beating around the bush', and to spending more quality time together. However, others perceived ACP as irrelevant. Some stated that the patient's wishes had not been met regardless of ACP. Others felt that EOL questions cannot be realistically considered until 'you're in the middle of it', because many factors are involved. In one case, participating in ACP led to a patient-relative conflict, resulting in EOL issues being 'tucked away'. CONCLUSIONS: The study reveals great diversity in patient and relative experiences of ACP. The study challenges previous research which mainly emphasises ACP as a valuable tool to optimise EOL care. This study stresses the importance of awareness of the highly individual nature of preferences and needs of patients and relatives regarding information, involvement and communication about EOL care.

Intensive care at the end of life in patients dying due to non-cancer chronic diseases versus cancer: a nationwide study in Denmark.

INTRODUCTION: It is unknown to what extent use of palliative care and focus on proactive planning of end-of-life (EOL) care among cancer patients is also reflected by less use of intensive care. We aimed to examine the use of intensive care in the EOL in patients dying as a result of non-cancer diseases compared with patients dying due to cancer. METHODS: We conducted a nationwide follow-up study among 240,757 adults dying as a result of either non-cancer chronic disease or cancer in Denmark between 2005 and 2011. Using the Danish Intensive Care Database, we identified all admissions and treatments in intensive care units (ICU) during the patients' last 6 months before death. We used prevalence ratios (aPRs) adjusted for age, sex, comorbidity, marital status and residential region to compare the 6-month prevalence of ICU admissions as well as treatment with invasive mechanical ventilation (MV), non-invasive ventilation (NIV), renal replacement therapy (RRT) and inotropes and/or vasopressors. In addition, length of ICU stay and death during ICU admission were compared among non-cancer and cancer patients dying between 2009 and 2011. RESULTS: Overall 12.3 % of non-cancer patients were admitted to an ICU within their last 6 months of life, compared with 8.7 % of cancer patients. The overall aPR for ICU admission was 2.11 [95 % confidence interval (CI) 1.98-2.24] for non-cancer patients compared with cancer patients and varied widely within the non-cancer patients (patients with dementia, aPR 0.19, 95 % CI 0.17-0.21; patients with chronic obstructive lung disease, aPR 3.19, 95 % CI 2.97-3.41). The overall aPRs for treatment among non-cancer patients compared with cancer patients were 1.40 (95 % CI 1.35-1.46) for MV, 1.62 (95 % CI 1.50-1.76) for NIV, 1.19 (95 % CI 1.07-1.31) for RRT and 1.05 (95 % CI 0.87-1.28) for inotropes and/or vasopressors. No difference in admission length was observed. Non-cancer patients had an increased risk of dying in an ICU (aPR 1.23, 95 % CI 0.99-1.54) compared with cancer patients. CONCLUSIONS: Overall, patients dying as a result of non-cancer diseases were twice as likely to be admitted to ICUs at the EOL as patients dying due to cancer. Further studies are warranted to explore whether this difference in use of intensive care reflects an unmet need of palliative care, poor communication about the EOL or lack of prognostic tools for terminally ill non-cancer patients.

Talking about sensitive topics during the advance care planning discussion: A peek into the black box.

OBJECTIVE: Advance care planning (ACP) discussions are emphasized as a valuable way of improving communication about end-of-life care. Yet we have very little knowledge of what goes on during actual ACP discussions. The aim of our study was to explore how the sensitive topics of end-of-life decisions are addressed in concrete ACP discussions, with special focus on doctor-patient interactions. METHOD: Following a discourse-analysis approach, the study uses the concept of doctor and patient "voices" to analyze 10 directly observed and audiotaped ACP discussions among patients, relatives, and a physician, carried out in connection with a pilot study conducted in Denmark. RESULTS: Previous studies of directly observed patient-physician discussions about end-of-life care show largely ineffective communication, where end-of-life issues are toned down by healthcare professionals, who also tend to dominate the discussions. In contrast, the observed ACP discussions in our study were successful in terms of addressing such sensitive issues as resuscitation and life-prolonging treatment. Our analysis shows that patients and relatives were encouraged to take the stage, to reflect, and to make informed choices. Patients actively explored different topics and asked questions about their current situation, but some also challenged the concept of ACP, especially the thought of being able to take control of end-of-life issues in advance. SIGNIFICANCE OF RESULTS: Our analysis indicates that during discussions about sensitive end-of-life issues the healthcare professional will be able to pose and explore sensitive ACP questions in a straightforward manner, if the voices that express empathy and seek to empower the patient in different ways are emphasized.

Translation, adaptation and data quality of a Danish version of the Burden Scale for Family Caregivers.

BACKGROUND: The burden of caregiving can have various negative consequences. There is a need for health professionals to be able to measure the burden of caregiving among relatives of end-stage cancer patients in a valid way. The Burden Scale for Family Caregivers (BSFC) has 28 items and was developed as a clinical tool for measuring the self-reported burden among family caregivers caring for a relative at home. AIM: To make a standardized translation of the English version of the BSFC into a Danish version and to report data quality in a group of Danish family caregivers caring for palliative care cancer patients. MATERIAL AND METHOD: The BSFC was translated following WHO guidelines. Ninety family caregivers of end-stage cancer patients were sent BSFC as part of a larger questionnaire. A total of 75 (83%) returned the questionnaire. Excluding responses with two or more missing items, 58 (64%) participants completed the BSFC. RESULTS: The words 'care', 'caregiving' and 'caregiver' were a challenge to the translators. The item response was moderate with missing answers from 4.0 to 18.7%. For the total sum-score, mean perceived burden amongst participants was low (mean score 23.56 of max 84.00). Cronbach's alpha was 0.91 and average inter-item correlation 0.26. Item-rest correlations ranged from -0.02 to 0.72 and were below 0.40 for seven items. High scores on the BSFC was statistically significantly correlated with the feeling of social isolation (ρ = -0.332, p = 0.013) and with the dyspnoea subscale of the EORTC-QLQ-15-PAL (ρ = 0.322, p = 0.012) but not with poor self-reported health (ρ = -0.036, p = 0.805). CONCLUSION: The BSFC was translated into Danish and showed problems with some data quality and validity measures. Hence, further psychometric testing on a larger population is needed before the scale can be recommended as a sum-scale for scientific and clinical use.

Low confidence among general practitioners in end-of-life care and subcutaneous administration of medicine.

INTRODUCTION: Most terminally ill patients prefer to die at home, and the general practitioner (GP) is central in making this possible. However, knowledge is needed about the GP's level of confidence in assuming this task and with subcutaneous (SC) administration of medicine in end-of-life care. The aim of this study was to determine if GPs used SC needle and medication in end-of-life care, if they felt confident about being principally responsible for palliative trajectories and whether such confidence was associated with GP characteristics. MATERIAL AND METHODS: This was a cross-sectional questionnaire survey of all 332 GPs practising in Copenhagen, Denmark. Questions covered the GPs' use of SC medication/needle and their confidence in being principally responsible for palliative trajectories. RESULTS: The survey response rate was 61%. 43% of the respondents had been principally responsible for a minimum of one palliative trajectory, and only 11% of these GPs had used a SC needle during this process. 57% felt very or somewhat confident being principally responsible and 27% felt very or somewhat confident administrating SC medicine. Confidence as principally responsible was positively associated with the number of palliative trajectories for which the GP had been responsible, but no significant associations with the GPs' age, gender or practice organisation were found. CONCLUSION: We found that few GPs in Copenhagen feel very confident about being responsible for terminal care and that very few used SC needles. Hence, more education and training in this field is warranted. Further research is needed into how GPs may best become involved and supported in end-of-life care. FUNDING: Danish General Practitioners' Educational and Development Fund. TRIAL REGISTRATION: not relevant.

Who is the key worker in palliative home care?

OBJECTIVE: Palliative home care involves coordination of care between the professionals involved. The NICE guideline on supportive and palliative care (UK) recommends that teams, regardless of their base, should promote continuity for patients. This may involve nomination of a coordinating "key worker". This study aimed to explore who acts as key worker and who ought to take on this role in the views of patients, relatives, and primary care professionals. Furthermore, it aimed to explore the level of agreement on this issue between study participants. DESIGN: Interview and questionnaire study. SETTING: Former County of Aarhus, Denmark (2008-2009). SUBJECTS: Ninety-six terminally ill cancer patients, their relatives, general practitioners (GPs), and community nurses (CNs). MAIN OUTCOME MEASURES: Actual key worker as valued by patients, relatives, and primary care professionals; ideal key worker as valued by patients and relatives. RESULTS. Patients, relatives, GPs, and CNs most often saw themselves as having been the key worker. When asked about the ideal key worker, most patients (29%; 95%CI: 18;42) and relatives (32%; 95%CI: 22;45) pointed to the GP. Using patients' views as reference, we found very limited agreement with relatives (47.7%; k = 0.05), with GPs (30.4%; k = 0.01) and with CNs (25.0%; k = 0.04). Agreement between patients and relatives on the identity of the ideal key worker was of a similar dimension (29.6%; k = 0.11). CONCLUSION: Poor agreement between patients, relatives, and professionals on actual and ideal key worker emphasizes the need for matching expectations and clear communication about task distribution in palliative home care.

[Coherent palliative effort in health care]. / Sammenhængende palliativ indsats i sundhedsvæsenet.

Effective palliative care requires continuous contact, exchange of information, and mutual professional respect between all the relevant health-care professionals. At least one of the professionals should coordinate care. Many patients with advanced cancer report uncovered palliative care needs. In order to assure that all cancer patients receive optimal palliative care, earlier initiation and better integration of basic palliative care (at hospitals and in primary care) and specialist palliative care teams are needed.

[Palliation in the primary care sector--shared care]. / Palliation i primaersektoren--shared care.

Palliative homecare has been a primary care task for a long time. The introduction of palliative specialist teams has given patients with severe symptoms the possibility of getting qualified help, but has also resulted in a general tendency to exclude primary care from palliative care. Barriers to providing shared care are the organization of palliative care and the working culture of health professionals. Increased focus on shared care research is needed in order to optimise palliative home care.