Comparing two models of outpatient specialised palliative care.

BACKGROUND: Ideally, patients with life-threatening illness who are suffering from multiple symptoms and reduced quality of life should receive palliative care that addresses their specific needs. The many well-defined clinical pathways may not always leave room for a person-centred and individual approach with respect to symptom control, psychosocial and spiritual support, and practical issues. In deciding how to organize outpatient specialist palliative care (SPC), it is relevant to include the perspectives of both patients and families. Thus, the aim of this study was to compare two models for outpatient SPC: first contact between patient, next-of-kin and doctor/nurse in the form of a home visit; and first visit in the hospital setting. METHOD: The study was a comparative mixed methods study with follow-up at one and 3 months. It started with a quantitative strand in the form of a 38-item questionnaire. Data were analysed using linear mixed effects models, with maximum likelihood estimation for each outcome variable. The repeated measurements on patient level were modelled by including random intercepts of patients in the mixed model. RESULTS: In total, 190 participants were enrolled, of whom 102 answered the first questionnaire. No differences were found between the two SPC interventions when development in satisfaction with care, communication or overall quality of life were compared. At baseline, a significantly higher score for satisfaction was found, in favour of first visit taking place in the hospital setting (65.91 vs. 55.83; p = 0.03) measured by FAMCARE-P16, and more patients were satisfied with availability of nurses and their abilities to listen and communicate than of doctors. CONCLUSION: Specialist palliative care is in request for many patients in the late phase of their disease. We found no significant differences in satisfaction with care, communication with health professionals or in overall quality of life between the two models. This may imply that access to SPC is more important than the model that is applied, and that a person-centred approach together with time available may matter more than the context. These two factors should be considered when implementing SPC.

Oral morphine drops for prompt relief of breathlessness in patients with advanced cancer-a randomized, double blinded, crossover trial of morphine sulfate oral drops vs. morphine hydrochloride drops with ethanol (red morphine drops).

PURPOSE: Episodic breathlessness is frequent in palliative cancer patients. Opioids are the only pharmacological agents with sufficient evidence in treatment. In Denmark, the main recommendation is red morphine drops (RMD), an off-label solution of morphine, ethanol, and red color (cochenille) described since 1893 (Pharmacopoea Danica). In 2015, the Danish Medicines Agency increased focus on off-label medicines and recommended registered morphine drops without ethanol instead. However, our palliative patients told us that RMD was better. For that reason, we conducted a clinical trial to clarify any perceived difference between the two types of drops. METHODS: We conducted a randomized, double blinded, crossover trial. Patients were asked to perform standardized activity (2-min walk) aiming to provoke breathlessness. Primary endpoint (breathlessness NRS) and secondary endpoints (saturation, pulse, respiratory frequency) were measured before (t = 0) and after test medicine at t = 1, t = 3, t = 5, t = 10, and t = 20 min. After 2-4 days (washout period), the patients repeated the test, receiving the alternative drops in a blinded setup (crossover). RESULTS: In the first 3 min, the relative drop in breathlessness for morphine drops with ethanol (RMD) was significant more than for morphine drops without ethanol. We found no significant difference in secondary endpoints. CONCLUSIONS: A conclusion could be that ethanol might facilitate morphine absorption in the mouth. Our results needs further research of opioid absorption in the mouth as well as trials, testing morphine vs. more lipophilic opioids. The RMD drops are cheap, easy to use, and noninvasive and keep the patient independent of health care professionals.

[Opioids for refractory dyspnoea in palliation].

Dyspnoea is cardinal symptom in chronic obstructive lung disease and common in palliative phases of cancer and other chronic medical diseases. Low-dose opioids is frequently used off-label. This review examines the evidence and safety as well as administration forms and pharmacokinetics using low dose opioids for dyspnoea. Conclusively, there seems to be clinical efficacy although further studies are needed. Furthermore, the authors recommend Danish Medical Agency to legislate low-dose morphine to palliative patients with refractory dyspnoea.

Why are some patients in treatment for advanced cancer reluctant to consult their GP?

OBJECTIVES: To analyse cancer patients' views and perspectives on mechanisms and barriers to involving the GP in the late treatment phase of advanced cancer. DESIGN: Qualitative, semi-structured interview study of 16 patients with advanced cancer and their next of kin. Seven patients were re-interviewed after six months and three after 12 months. SETTING: Patients' home in Region South, Denmark. RESULTS: The cancer patients described how they developed a personal relationship with the staff at the cancer treatment centre. They also described some kind of dependability towards the hospital staff and therefore consulted the doctor or the staff at the cancer treatment centre before seeking advice from their GP. Some patients found that the GP was not familiar enough with the treatments given; others that they did not want to inconvenience the busy GP with what they perceived to be minor non-treatment-related matters. However, as the disease progressed they also described how they perceived unmet psychosocial needs. After ending chemotherapy, re-establishment of the contact between patient and GP was in this study dependent on a proactive attitude by the GP. CONCLUSION: GPs are important for cancer patients' possibility of staying at home and dying at home. This study, however, shows that due to some patients' barriers special attention is needed to guarantee the switch over from the cancer treatment centre to home-based end-of-life care. This is increasingly important as cancer patients to a still larger extent receive hospital-based, active treatment until shortly before death.

Population-based study of place of death of patients with cancer: implications for GPs.

BACKGROUND: A majority of patients with cancer who are seriously ill have a preference of dying at home. However, only a minority of patients actually die at home in most Western countries. AIM: To explore factors associated with place of death in an unselected population of patients with cancer. DESIGN OF STUDY: Case-control study. SETTING: County of Funen, Denmark. METHOD: Register linkage from six Danish healthcare registers. RESULTS: The GP's home visit during the last 3 months before death was inversely associated with dying in hospital (adjusted odds ratio [OR] = 0.08, 95% confidence interval [CI] = 0.06 to 0.12) and so were community nurses visiting the home (OR = 0.36, 95% CI = 0.26 to 0.48). Furthermore, being married (OR = 0.68, 95% CI = 0.56 to 0.85), and age at death of 40-65 years (OR = 0.70, 95% CI = 0.56 to 0.90) seemed to have an effect. Hospital death was associated with survival time of less than 1 month (OR = 2.27, 95% CI = 1.69 to 3.13). Type of cancer, sex, or residence (urban versus rural) were not associated with a hospital death in this multivariate analysis. CONCLUSIONS: Dying at home was, to a higher extent, associated with GP visit and, to a lesser extent, community nurse visit than with clinical and sociodemographic characteristics of patients with cancer. In our view, these findings indicate the importance of the GP in particular. To increase the opportunity to die at home, more research is needed on the role of the GP and the interface between GPs and other providers of health care at home for patients who are terminally ill with cancer.

Does persistent involvement by the GP improve palliative care at home for end-stage cancer patients?

OBJECTIVE: To analyse the effect of GP home visits on the granting of a terminal declaration (TD) and on place of death. PARTICIPANTS AND DESIGN: A total of 2025 patients with cancer as the primary cause of death in the period 1997-1998, were investigated in a mortality follow-back design using the Danish Cancer Register and four administrative registers. The Danish TD can be issued by a physician for patients with an estimated prognosis of six months or less. The TD gives the right to economic benefits and increased care for the dying patient. SETTING: The island of Funen/Denmark. MAIN OUTCOME MEASURES: Main outcome--hospital death. Intermediate outcome--TD. RESULTS: A total of 38% of patients received a TD and 56% died in hospital. GP home visits in the week before TD (odds ratio (OR): 16.8; 95% CI: 8.2-34.4), as well as four weeks before TD (OR: 6.4; 95% CI: 4.5-9.2) were associated with an increased likelihood of receiving a TD. GP home visits in the group with TD (OR: 0.18; 95% CI: 0.11-0.29) and the group without TD (OR: 0.08; 95% CI: 0.05-0.13) was inversely associated with hospital death. A dose-response relationship was found in both groups. CONCLUSION: Persistent involvement by the GP is associated with improved end-of-life care for cancer patients. Provided that temporal relations are taken into account, the mortality follow-back design can be a suitable and ethical research method to highlight and monitor end-of-life cancer care.