Barriers and facilitators to palliative care of patients with chronic heart failure in Germany: a study protocol

Background. Despite its high prevalence, similar symptoms and symptom burden, people suffering from chronic heart failure receive less palliative care than patients with malignant diseases. Internationally, numerous barriers to palliative care of patients with chronic heart failure are known, however, there are no credible data regarding barriers and facilitators to palliative care of people suffering from chronic heart failure available for Germany. Design and Methods. Tripartite study. First part of this study evaluates health care providers’ (physicians and nurses) perceived barriers and facilitators to palliative care of patients with chronic heart failure using a qualitative approach. At least 18 persons will be interviewed. In the second part, based on the results of part one, a questionnaire about barriers and facilitators to palliative care of patients with chronic heart failure will be designed and applied to at least 150 physicians and nurses. In the last part a classic Delphi method will be used to develop specific measures to improve the palliative care for chronic heart failure patients. Expected Impact for Public Health. The results of this study will help to understand why patients with heart failure are seldom referred to palliative care and will provide solutions to overcome these barriers. Developed solutions will be the first step to improve palliative care in patients with heart failure in Germany. In addition, the results will help health care providers in other countries to take action to improve palliative care situations for heart failure patients

Improvement of Restless Legs Syndrome Under Treatment of Cancer Pain With Morphine and Fentanyl

Restless-Legs-Syndrome (RLS), also known as Willis-Ekbom disease, is a sleep- and rest related disorder characterized by the unpleasant urge to move the legs. Pharmacological therapy is mainly based on dopamine-agonists and delta-2-alpha calcium channel ligands. Also, randomized-controlled-trials (RCTs) reported effectiveness of oral oxycodone (in combination with naloxone), and intrathecal opioids have also been administered for this indication. In the case reported here, a patient with advanced pancreatic cancer was referred to an acute palliative care unit for the treatment of cancer-related pain. Yet, in thorough exploration of her symptom burden, the patient reported that she felt her quality of life had been predominantly limited by symptoms other than cancer pain. Her medical history and neurological examination revealed that these symptoms were most obviously caused by severe RLS. In the years before, pharmacological therapies with dopamine-agonists and delta-2-alpha calcium channel ligands were initiated, but failed to relieve the RLS. In the palliative care ward, intravenous morphine was successfully titrated to treat her cancer pain. Concurrently, the patient also experienced almost complete relief from her RLS-symptoms and an increase in quality of life. The amelioration of her RLS-symptoms continued after morphine therapy was switched from intravenous to oral administration. Even after the patient was dismissed to home care and opioid rotation to transdermal fentanyl, symptom control of RLS remained excellent. To our knowledge, this is the first report of successfully treating RLS with intravenous and oral morphine. Since morphine is more easily available worldwide and the cost of morphine therapy is substantially lower compared to oxycodone/naloxone, comparisons to morphine may be an intriguing option for future RCTs

Planning training seminars in palliative care: a cross-sectional survey on the preferences of general practitioners and nurses in Austria

<p>Abstract</p> <p>Background</p> <p>Training in palliative care is frequently requested by health care professionals. However, little is known in detail about the subject matters and the educational preferences of physicians and staff or assistant nurses in this field.</p> <p>Methods</p> <p>All 897 registered GPs and all 933 registered home care nurses in the district of Steiermark/Austria were sent postal questionnaires.</p> <p>Results</p> <p>Results from 546 (30%) respondents revealed that GPs prefer evening courses and weekend seminars, whereas staff and assistant nurses prefer one-day courses. Multidisciplinary sessions are preferred by almost 80% of all professional groups. GPs preferred multi disciplinary groups most frequently when <it>addressing psychosocial needs </it>(88.8%) and <it>ethical questions </it>(85.8%). Staff and assistant nurses preferred multidisciplinary groups most frequently in the area of <it>pain </it>management (88%) and opted for multi disciplinary learning to a significantly higher extent than GPs (69%; p < 0.01). Those topics were ranked first which are not only deepening, but supplementing the professional training. On average, GPs were willing to spend a maximum amount of € 400 per year for training seminars in palliative care, whereas nurses would spend approximately € 190 for such classes.</p> <p>The results provide a detailed analysis of the preferences of GPs and nurses and offer guidance for the organisation of training seminars in palliative care.</p> <p>Conclusions</p> <p>Medical and nursing education programs often pursue separate paths. Yet our findings indicate that in palliative care multidisciplinary training seminars are favoured by both, doctors and nurses. Also, both groups prefer topics that are not only deepening, but supplementing their professional knowledge.</p

“This is the worst that has happened to me in 86 years”: A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease

Purpose Pediatric palliative care focuses mainly on the children suffering from a life‐limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. Therefore, the aim of this study was to investigate the experiences of grandparents during the end‐of‐life care and after the death of a grandchild. Design and Methods A qualitative approach using semi‐structured interviews was chosen. Fifteen grandparents of 10 children who had died of neurological or oncological diseases were interviewed. Participants were recruited among the families cared by the pediatric palliative care team of a children's hospital in northern Switzerland. Grandparents were interviewed at least 1 year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Results Regardless of the child's diagnosis and circumstances of death, the participants described how the child's death had a major impact on them and their entire family. Grandparents felt obligated to support the family and constantly be a source of support for the parents. They bore a heavy psychological burden as they cared and mourned not only for their dying grandchild but also for their own daughter or son. Grandparents struggled with their ability to communicate about disease and death. They tried to process and make sense of their loss by remembering the deceased child. Practice Implications These findings emphasize the importance of identifying and understanding grandparents' suffering. Pediatric palliative care teams can achieve this by actively making contact with grandparents, taking their concerns seriously and demonstrating appreciation for their role in supporting the family

“Scanxiety” and a sense of control: the perspective of lung cancer survivors and their caregivers on follow-up - a qualitative study

Abstract Objectives Lung cancer survivors often suffer from physical, emotional and social long-term effects of disease and treatment. Caregivers are also affected by the cancer diagnosis throughout the course of the disease and are frequently burdened by high levels of psychosocial stress. However, little is known about how follow-up care after the completed treatment phase can help to improve long-term quality of life. In the context of patient-centred cancer care, considering the survivors’ and caregivers’ perspectives is an important step toward improving care structures. We therefore explored how lung cancer survivors and their caregivers experience follow-up examinations and their possible psychosocial effects on everyday life in order to shed light on what support is helpful for improving their quality of life. Material and Methods 25 survivors after curative lung cancer treatment and 17 caregivers underwent a face-to-face semi-structured, audio-recorded interview that was analysed using qualitative content analysis. Results Especially burdened cancer survivors and caregivers described recurring anxiety before a follow-up appointment influencing their everyday life. At the same time, follow-up care also provided reassurance of still being healthy and helped regain a sense of security and control until the following scan. Despite possible long-term consequences in everyday life, the interviewees reported that the survivors´ psychosocial needs were not explicitly assessed or discussed. Nevertheless, the interviewees indicated that conversations with the physician were important for the success of “good” follow-up care. Conclusion Anxiety surrounding follow-up scans, also known as “scanxiety”, is a common problem. In this study, we expanded on previous findings and found a positive aspect of scans, namely regaining a sense of security and control, which can strengthen the psychological well-being of the survivors and their families. To optimize follow-up care and improve the quality of life of lung cancer survivors and caregivers, strategies to integrate psychosocial care, like the introduction of survivorship care plans or increased use of patient-reported outcomes, should be explored in the future