IAHPC Research Advisor Dr. Tania Pastrana selects one article from recently published medical literature and describes why it is worthwhile.
Santini D, Armento G, Giusti R, Ferrara M, Moro C, Fulfaro F, Bossi P, Arena F, Ripamonti CI. ESMO Guidelines Committee. Management of Orphan Symptoms: ESMO Clinical Practice Guidelines for diagnosis and treatment. ESMO Open 2020; 5(6): e000933. DOI: 10.1136/esmoopen-2020-000933
A fundamental aspect of palliative care provision is prevention, early identification, comprehensive assessment, and management of distressing symptoms.1 Pain, breathlessness, nausea and vomiting, and fatigue have been described as the most distressing and frequent symptoms in palliative care.2 However, other prevalent symptoms remain unaddressed in clinical practice because they are not mentioned by the patient, are not specifically sought by the health care professional, and are not included in most symptom assessment tools. They are the so-called “orphan symptoms.” A team led by Carla Ripamonti provide key recommendations on the management of orphan symptoms, including muscle cramps, myoclonus, taste alterations, xerostomia, cough, hiccup, rectal tenesmus, and restless legs syndrome.
Aside from the article’s useful recommendations, I considered it important for health care professionals and other providers to be aware of this group of orphan symptoms that can have an impact on the quality of life of patients with advanced cancer. Simply asking about these symptoms in the patients they care for is an important step forward in easing their discomfort.
1. IAHPC. Global Consensus-Based Definition of Palliative Care. 2018, Houston, TX. Available online here.
2. Henson LA, Maddocks M, Evans C, Davidson M, Hicks S, Higginson IJ. Palliative Care and the Management of Common Distressing Symptoms in Advanced Cancer: Pain, breathlessness, nausea and vomiting, and fatigue. J Clin Oncol 2020; 38(9): 905-914. DOI: 10.1200/JCO.19.00470
The articles below are selected from Barry R. Ashpole’s weekly report, Media Watch.
Palliative Medicine Reports | Online – 5 November 2020 – This study holds several important implications for practice and new approaches to engaging primary care physicians in home-based palliative care (PC). Findings suggest the crucial role that factors such as physician PC knowledge, time constraints, practice structure, and collaborative care styles and preferences serve to successfully engage primary care physicians in new models of care such as home-based PC. Several areas identified in this research may be amenable to change, however, it is likely that the largest barrier is lack of PC health literacy as it relates to the widespread clinician-held myth of equating PC with hospice. DOI: 10.1089/pmr.2020.0009
European Journal of General Practice | Online – 20 October 2020 – Participants in this study expressed a desire for therapeutic freedom. They were worried that imposing guidelines and standardisation of palliative care (PC) according to theoretical ideals would reduce the creativity of “tailor-made care.” More than in PC protocols, GPs are interested in feedback and peer review methods to improve their own PC skills. The phrase “palliative care” is still used with difficulty. Some GPs never use these words while others have a personal mission to diminish the PC taboo. GPs often struggle with collaboration issues. The main problem is the difficulty to guarantee continuity of care. DOI: 10.1080/13814788.2020.1825675
BMC Family Practice | Online – 31 October 2020 – Problems related to the home-based practice of palliative care (PC) by GPs are well known, yet few studies highlight the resources that GPs actually used. This study outlines such resources, including structures (regional assistance networks, Hospitalization at Home), resource personnel (medical, paramedical and family), and schedule organization. A GP’s status implies a tacit moral contract that involves managing home-based PC when it is needed. This moral responsibility is more a resource than it is a burden for the GPs who rely on their care values in order to face difficulties. DOI: 10.1186/s12875-020-01295-7
What do positive and negative experiences of patients, relatives, general practitioners, medical assistants, and nurses tell us about barriers and supporting factors in outpatient palliative care? A critical incident interview study.
Media Watch monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. View current and back issues here.