Ørnulf Paulsen

Background: Advance care planning provides a structured approach to conversations about values and preferences but is uncommon in clinical practice. We implemented advance care planning as routine at the initiation of an individually tailored palliative care pathway in Norway. An advance care planning conversation formed part of the initial care coordination meeting when palliative care was introduced to older patients with advanced cancer. Healthcare professionals met with the patient and their relatives at home. This study aimed to assess the feasibility and acceptability of including advance care planning with older patients in a home-based palliative-care coordination meeting. Methods: We conducted a longitudinal ethnographic study utilizing ethnographic interviews with patients and their relatives within 1 week and 4 weeks after the initial meeting, and with healthcare professionals immediately before and after this meeting. Data were analysed using content analysis. Results: All patients perceived the advance care planning conversation as useful. Proper preparation and information were prerequisites for successful outcomes. The presence of relatives, the home-based setting and healthcare professionals’ communication skills provided a comfortable atmosphere. Open discussions about sensitive topics were enabled, and the dialogue continued to evolve within the families after the conversation. However, the patients and their relatives perceived the follow-up and documentation as insufficient. Conclusion: Embedding advance care planning in a home-based palliative-care coordination meeting may offer a feasible model of its implementation for older patients with advanced cancer. The conversation was well accepted, but preparation and systematic follow-up were crucial for ensuring high quality.

Background: There is an insufficient knowledge base for optimal parenteral nutrition (PN) use for patients with incurable cancer, leading to vague guidelines and varied practices. The aim of the study is to describe the practices and actual outcomes of PN in patients with incurable cancer at Norwegian hospitals. Methods: This multicentre study retrospectively reviewed 507 deceased patients (>18 years) receiving PN between 2011 and 2017. Data were collected from PN initiation until death, and analyses were descriptive. Results: Fifty-one percent had upper and lower gastrointestinal cancers, and the main PN indications were insufficient intake (75%) and gastrointestinal malfunction (47%). Sixty-seven percent received no anticancer treatment. Forty-three (8%) received PN as temporary bridging to anticancer treatment, of whom fifteen (35%) resumed or initiated treatment. The median PN dose corresponded to 53% of estimated energy requirements, and 94% of the patients had complementary energy intake. The most common reason for discontinuation was expected imminent death (47%). While common symptoms during PN were nausea (52%), vomiting (46%), and oedema (37%), 15% reported improved wellbeing. Conclusions: In this real-world cohort, up to 80% of the patients would not meet the eligibility criteria of previous trials due to cancer diagnosis and treatment, gastrointestinal tract function, weight loss criteria or complications such as ascites. This study highlights the heterogeneity in how patients with incurable cancer receive PN, and emphasises the importance of individualised PN treatment, carefully and safely managed to meet the patients’ palliative care situation. Future real-world pragmatic patient-centred protocols bridging the gap between clinical trials and patients in clinical practice are warranted.

Background: The importance of holistic and person-centered palliative care is widely recognized, but the existential dimensions remain less focused. There is a need for more knowledge about the existential content in advance care planning (ACP) and the significance thereof in the context of home-based palliative care from the perspective of patients and their relatives. Objective: This study aimed to explore home-based ACP as an existential conversation when conducted as a part of a palliative-care coordination meeting, and how older home-dwelling patients with advanced cancer and their relatives experience its significance. Design: A narrative ethnographic design was employed. Methods: The reported empirical material is based on participant observations of the home-based ACP conversations and follow-up interviews with eight patients and their relatives. The analytical approach was guided by the theoretical framework of narrative ethnography. Results: The ACP conversations strongly supported the patients and their relatives in discussing existential concerns, such as existential fear, lived lives, and decision-making at the end of life. The significance of these conversations extended beyond the initial conversation by profoundly influencing subsequent family interactions and enhancing their ability to make informed and meaningful decisions regarding future medical treatment and care. Conclusion: Home-based ACP can be a valuable approach for addressing the existential concerns of older patients and their relatives in the final stages of life. Home-based ACP conversations start a process that continues within the family context and affects their relational dynamics and communication patterns. This study indicates that the home environment fosters discussions about past, present, and future lives, shaping the content and outcomes of home-based ACP.

The aim of advance care planning (ACP) is to enable patients to define and discuss their values and preferences to ensure that the care they receive is consistent with their needs and wishes. Most studies of ACP with older adults focus on conversations conducted in institutions. This study aimed to explore how ACP with older patients is carried out and experienced by healthcare professionals when the conversations occur in their private homes. The data were obtained from participant observations of ACP conversations in the homes of eight older patients with advanced cancer, which also involved relatives and healthcare professionals. Additionally, ethnographic interviews were conducted with the healthcare professionals. We undertook a narrative analysis of what was said, and how the individuals acted and interacted. The home influenced both the substance and form of the ACP conversations. The patients and relatives welcomed the healthcare professionals as guests and were encouraged to share their perceptions of their current situation, joys and worries. Their values were often implicit in their stories about past experiences. The planning mainly focused on life-prolonging treatment and the preferred future place of care. Several patients were not ready to discuss one or more ACP issues. The palliative-care-team physician addressed the patients’ readiness for ACP by asking for permission to move on to a different topic, shifting between serious and lighter topics, and using elements from the home as ‘door openers’ to continue conversations. ACP conversations were an essential basis for future palliative care and cooperation, giving important additional information about the patient and their relatives. Conducting the ACP conversations in the patients’ homes ensured a homely atmosphere that facilitated a caring approach when sensitive issues were discussed, and in turn supported the identification of important personal values. The healthcare professionals expressed that the ACP conversations represented an essential common reference point and provided a shared awareness of the expected disease trajectory and the values, preferences and needs of the patient. These findings are particularly important given that many older patients struggle to verbalize or form an opinion on issues affecting their future.

Purpose: Although corticosteroids are frequently used in patients with advanced cancer, few studies have examined the impact of these drugs on patient-reported sleep. We aimed to examine the short-term impact of methylprednisolone on patient-reported sleep in patients with advanced cancer.Methods: Patient-reported sleep was a predefined secondary outcome in a prospective, randomized, placebo-controlled, double-blind trial that evaluated the analgesic efficacy of corticosteroids in advanced cancer patients (18+), using opioids, and having pain ≥ 4 past 24 h (NRS 0–10). Patients were randomized to the methylprednisolone group with methylprednisolone 16 mg × 2/day or placebo for 7 days. The EORTC QLQ-C30 (0–100) and the Pittsburgh Sleep Quality Index questionnaire (PSQI) (0–21) were used to assess the impact of corticosteroids on sleep at baseline and at day 7.Results: Fifty patients were randomized of which 25 were analyzed in the intervention group and 22 in the control group. Mean age was 64 years, mean Karnofsky performance status was 67 (SD 13.3), 51% were female, and the mean oral daily morphine equivalent dose was 223 mg (SD 222.77). Mean QLQ-C30 sleep score at baseline was 29.0 (SD 36.7) in the methylprednisolone group and 24.2 (SD 27.6) in the placebo group. At day 7, there was no difference between the groups on QLQ-C30 sleep score (methylprednisolone 20.3 (SD 32.9); placebo 28.8 (SD 33.0),p = 0.173). PSQI showed similar results.Conclusions: Methylprednisolone 16 mg twice daily for 7 days had no impact on patient-reported sleep in this cohort of patients with advanced cancer.Trial registration: Clinical trial information NCT00676936 (13.05.2008)

Background: Several publications have addressed the need for a systematic integration of oncological care focused on the tumor and palliative care (PC) focused on the patient with cancer. The exponential increase in anticancer treatments and the high number of patients living longer with advanced disease have accentuated this. Internationally, there is now a persuasive argument that introducing PC early during anticancer treatment in patients with advanced disease has beneficial effects on symptoms, psychological distress, and survival. Methods: This is a national cluster-randomized trial (C-RCT) in 12 Norwegian hospitals. The trial investigates effects of early, systematic integration of oncology and specialized PC in patients with advanced cancer in six intervention hospitals compared with conventional care in six. Hospitals are stratified on the size of local catchment areas before randomization. In the intervention hospitals, a three-part complex intervention will be implemented. The backbone of the intervention is the development and implementation of patient-centered care pathways that contain early, compulsory referral to PC and regular and systematic registrations of symptoms. An educational program must be completed before patient inclusion. A total of 680 patients with advanced cancer and one caregiver per patient are included when patients come for start of last line of chemotherapy, defined according to national treatment guidelines. Data registration, clinical variables, and patient- and caregiver-reported outcomes take place every 2 months for 1 year or until death. The primary outcome is use of chemotherapy in the last 3 months of life by comparing the proportion of patients who receive this in the intervention and control groups. Primary outcome is use of chemotherapy in the last 3 months before death, i.e. number of patients. Secondary outcomes are initiation, discontinuation and number of cycles, last 3 months of life, administration of other medical interventions in the last month of life, symptom burden, quality of life (QoL), satisfaction with information and follow-up, and caregiver health, QoL, and satisfaction with care. Discussion: Results from this C-RCT will be used to raise the awareness about the positive outcomes of early provision of specialized palliative care using pathways for patients with advanced cancer receiving medical anticancer treatment. The long-term clinical objective is to integrate these patient-centered pathways in Norwegian cancer care. The specific focus on the patient and family and the organization of a predictable care trajectory is consistent with current Norwegian strategies for cancer care. Trial registration: ClinicalTrials.gov, NCT03088202. Registered on 23 March 2017.

Despite the high prevalence of insomnia in patients with advanced cancer, there are no randomized controlled trials on pharmacological interventions for insomnia in this group of patients. A variety of pharmacological agents is recommended to manage sleep disturbance for insomnia in the general population, but their efficacy and safety in adults with advanced cancer are not established. Thus, there is a need to evaluate the effectiveness of medications for insomnia in order to improve the evidence in patients with advanced cancer. One of the most used sleep medications at present in patients with cancer is zopiclone. This is a randomized, double-blind, placebo-controlled, parallel-group, multicenter trial. A total of 100 patients with metastatic cancer who report insomnia will be randomly allocated to zopiclone or placebo. The treatment duration with zopiclone/placebo is 6 consecutive nights. The primary endpoint is patient-reported sleep quality during the final study night (night 6) assessed on a numerical rating scale of 0–10, where 0 = Best sleep and 10 = Worst possible sleep. Secondary endpoints include the mean patient-reported total sleep time and sleep onset latency during the final study night (night 6). Results from this study on treatment of insomnia in advanced cancer will contribute to clinical decision-making and improve the treatment of sleep disturbance in this patient cohort. ClinicalTrials.gov, NCT02807922 . Registered on 21 June 2016.

19.02.2018: Doktoravhandlinger - Kortikosteroider ga ikke smertelindrende effekt, men bedring av fatigue og appetitt hos alvorlig syke kreftpasienter.

Systemic inflammation is associated with reduced quality of life and increased symptoms in patients with advanced cancer. The aims of this study were to examine the relationships between inflammatory biomarkers and the Patient Reported Outcome Measures (PROMs) of pain, appetite and fatigue; and to explore whether levels of baseline biomarkers were associated with changes in these PROMs following treatment with corticosteroids. An exploratory analysis was done on a trial examining the analgesic properties of corticosteroids in patients with advanced cancer. Inclusion criteria were: >18 years, taking opioids for moderate or severe cancer pain; pain ≥4 (numerical rating scale 0–10). Serum was extracted and levels of inflammatory biomarkers were assessed. PROMs of pain, appetite and fatigue were assessed using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30). The relationships between PROMs and inflammatory biomarkers were examined using Spearman Rho-Rank and multiple regression analysis. Data were available on 49 patients. Levels of sTNF-r1, IL-6, IL-18, MIF, MCP-1, TGF-β1, IL-1ra, and C-reactive protein (CRP) and Erythrocyte sedimentation rate (ESR) were elevated; IL-1β, IL-2, IL-4, IL-8, IL-10, IL-12(p70), interferon-γ, MIP-1α, and TNF-α were below the level of detection. The following correlations were observed: appetite and IL-6 and CRP; fatigue and IL-1ra (r_s: 0.38–0.41, p< .01). There was no association between pretreatment biomarkers and effect from corticosteroid treatment. In patients with advanced cancer and pain, some pro-inflammatory cytokines were related to appetite and fatigue. Inflammatory biomarkers were not associated with pain or with the efficacy of corticosteroid therapy. Further research examining the attenuation of the systemic inflammatory response and possible effects on symptoms would be of interest.