47 e-Letters

  • Personalized treatment plan for children and adolescents with advanced hematological malignancies:

    Research focusing on quality of life (QoL) in children and adolescents with high-risk malignancy (HRM) is of primary importance. As most of these patients are treated in low and middle income countries1, publications from Central America are of great value. We are thankful to Salaverria et al. for their work addressing this complex and key subject2.
    Patients with HRM were defined by Mahmood et al. as having more than 50% risk of death due to their disease. These patients should receive optimal symptoms management and optimal disease directed therapies to increase both their survival and QoL. To achieve this, the intervention of a specialized pediatric palliative care (PPC) team was proven feasible and effective3, 4. PPC is as a holistic approach that does not exclude cancer directed care and should include the best chemotherapy regimen aiming at optimal QoL and life expectancy.
    Salaverria et al. described a prospective cohort of 60 patients suffering from relapsed or refractory leukemia. 44 patients of them died, 39 of whom due to leukemia progression. All Enrolled patients were prospectively followed and assessed for self or proxy-reported QoL with a nearly exhaustive data collection. These results give us a very precise and unprecedented insight into HRM patients’ QoL.
    In this sample, all patients received chemotherapy, 65% of patients received specialized PPC at inclusion and 79.5% received specialized PPC in the last month of life. Initial curative in...

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  • Letter to the Editor in response to "What is the impact of clinically assisted hydration in the last days of life?A systematic literature review and narrative synthesis"

    Dear Editor

    We read with particular interest the recent systematic review and narrative synthesis of clinically assisted hydration in the last days of life [1]. Unsurprisingly, the authors concluded that “there is currently insufficient evidence to draw firm conclusions on the impact of CAH in the last days of life”, which supports the findings of previous reviews [2,3]. We agree with their conclusion, but would like to make some comments on the “quality” / applicability of some of the included (and excluded) studies.

    Our concerns relate to:

    1. Study type – end-of-life care should be evidence based, and the “gold standard” remains the randomised controlled trial (RCT).

    2. Study population – our study [4] excluded patients with dehydration (and with contraindications to CAH), but the Cerchetti et al RCT [5] involved patients with dehydration and renal failure, and the “excluded” Bruera et al RCT [6] specifically involved patients with dehydration. Hence, there is an issue about collating these data, and, importantly, extrapolating these data to the wider population.

    3. Study intervention – our study [4] used a variable volume of fluid, based on the patient’s weight (and in accordance with NICE guidance) [7], but the Cerchetti et al RCT [5], and the Bruera et al RCT [6], both used a fixed volume of fluid (e.g. 1 L / day). The rationale for this volume of fluid is unexplained, but it is much less than recommended for maintenance of hydration...

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  • What is inappropriate in end-of-life care?

    To the Editor. With interest we read the paper by Boddaert et al. [1] about quality of end-of-life cancer care in The Netherlands and recommend the authors with their work. Quality of end-of-life care is of great importance to both patient and relatives. Inappropriate interventions during the disease, certainly in the last 30 days of life, are undesirable. We agree to the benefit of a multifactorial approach in palliative care.

    Nevertheless, we have concerns about the use of the term “inappropriate care”, which was used abundantly to describe systemic anti-tumour treatment during the last 30 days of life. Treatment for patients with incurable malignancies aims to achieve two goals: optimization of the overall survival time and of quality of life. Boddaert et al focused on a small part of this complex care. Also, quantification of quality of end-of-life-care is hard, with measurable, but suboptimal indicators as place of death, systemic anti-tumour therapy during the last 30 days of life and consultation of palliative care specialists as used in this paper.

    Unfortunately, there is no optimum set for any of the indicators of (in-)appropriate care in the last 30 days of life. To aim for an as low as possible number of patients receiving systemic anti-tumour therapy during the last 30 days of their life, should not be a goal on itself. End-of-life care that actively defers from anti-tumour treatment can be potentially inappropriate too [2] and systemic treatme...

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  • Technical factors of venting gastrostomy and their impact on patient experience.

    Dear Editor,
    We read with great interest the article by Curry et al. on the outcomes after venting gastro-/jejunostomy from our own institution.
    While venting gastrostomy has a potentially important role to play in cancer palliation, it is offered in only approximately 60% of UK centres. The outcome and patient experience is highly dependent on good tube function. Continuous decompression of the stomach and upper small bowel is essential to alleviate symptoms and stop the development of complications.
    Little is published on the technical aspects of the procedure, how to undertake this safely and what the requirements for patient selection and aftercare are. Would the authors please be so kind, as to provide some technical detail to guide the readership?
    To our knowledge there are no licensed devices for this purpose. What type of tubes did the authors review (push-PEGs +/- jejunal extension, G-tubes with gastropexy, gastrojejunostomy or transgastric jejunostomy tubes), what was the experience of 4-point gastropexy for GJ-tubes and what size was do they recommend to achieve adequate drainage, bearing in mind that balloon-retained silicone tubes have a much smaller inner lumen than polyurethane PEG tubes?
    Our attempts using 20Fr push-PEG tubes led to very poor patient experience, which has been improved by switching to gastro-jejunostomy tubes, as they achieve better drainage due accessing the fluid in the duodenum rather than in the stomach, we...

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  • The experiences of patients living with malignant pleural effusions

    To the editor
    We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
    We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
    A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.

    Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patient...

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  • Cannabinoids impact on insomniacs with chronic pain: how cautious should we be?

    Title: Cannabinoids impact on insomniacs with chronic pain: how cautious we should be?
    This correspondence provides a comment on the recent review article by Humer et al. (Int. J. Mol. Sci. 2020, 21(19), 7244; https://doi.org/10.3390/ijms21197244)
    Dear Editor,
    From the results of a recent cross-sectional study on patients with insomnia and chronic pain, published in the BMJ Support Palliat Care, Sznitman and colleagues have suggested that Medicinal Cannabis (MC) could have positive effects in sleep maintenance of patients experiencing chronic pain. Since both conditions, insomnia and chronic pain play an important role in the clinical arena, either related to their impact on the quality of life and associated comorbidities, but also because both have high rates of prevalence among the world population. This is a highly relevant finding, however, we believe that it deserves further consideration.
    Although insomnia majorly affects patients seeking care in clinics managing patients complaining of persistent pain1, other sleep conditions as obstructive sleep apnea (OSA) could also prevail in similar circumstances2. In fact, comorbid insomnia with sleep apnea (COMISA) frequently occurs and may lead to a more cautious clinical approach since this comorbid condition might have different etiological, pathophysiological, diagnostic, and therapeutic implications. Either Insomnia1 or OSA increases with age, wi...

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  • Law changes facilitate telemedicine

    Interesting reading the article by Sutherland et al [1] on the use of video consultations in palliative care. As a clinician, as an user and advocate of video consultations I entirely agree that telehealth can and must be used as one of the tools of our disposal to be more efficient looking after our patients. There is no doubt workload is a trigger for new models of care.

    Nevertheless, the pandemic has not only triggered an explosion in video consultations due to the need to minimise the risk of infection but a change in law in the United Kingdom that allows its full use, as in this country the death certificate includes the statement “Last seen alive by me …. ” and up to now there was a need to see the patient face to face within the last two weeks before death. Now, it is possible to have seen the patient within the last four weeks, and video consultations are considered as an option to face-to-face consultations.

    It is argued there will be no return to the old norm, and that many changes brought by the pandemic will remain after it passes. It is hoped telemedicine expansion will remain, but in palliative medicine it will only do if the law changes remain in place.

    1. Sutherland AE, Stickland J, Wee B. Can video consultations replace face-to-face interviews? Palliative medicine and the Covid-19 pandemic: rapid review. BMJ Supportive & Palliative Care 2020;10:271-275.

  • Response to ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’

    I read with interest the paper titled ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’ by Vanderstichelen et al (1) which reported on volunteers who care for terminally ill people. I consider that the authors’ conclusion that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members may be drawn from an incomplete understanding of Turner’s (2) concept of liminality.
    The term derives from limen meaning threshold and is used to denote moving across a boundary from one state to another. The model involves three stages: separation, transition (the liminal phase) and (re-) incorporation. Examples include changes in status, such as getting married or gaining majority, or in life-stage, such as birth and death.
    I argue that Vanderstichelen et al’s consideration that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members since they provide care which includes aspects of that given by both these ‘conceptually rigid and mutually exclusive domains’ (p. 9) shows that the volunteer role here is ambiguous rather than liminal. While ambiguity is a core feature of liminality as described by Turner and can be applied to the volunteer role – for example, when there are unclear boundaries between volunteer and paid staff roles (3) - the presence of this feature alone does not make the role liminal.
    I acknowledge liminality has been used in some organisational li...

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  • Response to: Does palliative care education matter to medical students? The experience of attending an undergraduate course in palliative care.

    Dear Editor,

    We read with great interest the article by Centeno et al (2016) with regards to medical students’ experience of palliative care. [1] As medical students, who have recently experienced compulsory palliative care teaching during our 4th year, we wished to offer an insight into our experiences on its importance within the curriculum.

    During pre-clinical years, there was a lack of emphasis on the holistic perspective of dying patients. The early attention on basic sciences can create the notion that medicine is oriented around ‘fixing people’, with little significance placed on the experience of dying. In the UK, the General Medical Council (GMC) provides guidelines for doctors on the ‘Treatment and care towards the end of life: good practice in decision making’. [2] Hence, a palliative care course is imperative, as it prepares medical students for one of the fundamental parts of medicine: respecting and nurturing the process of dying.

    As part of our curriculum we have numerous palliative care days throughout the year. They involved visiting a hospice and speaking to patients, their families and staff, both individually, as well as in small groups. Throughout these days there are numerous activities that aid us to challenge and consider the process of dying. These involved reflective practices to allow students to consider their feelings if they were losing the most valued aspects of their life, as well as talks from family members about th...

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  • Response to "anticipatory syringe drivers: a step too far"

    Dear Editor,
    We read the editorial with interest. As they rightly observe, there are important problems prescribing anticipatory syringe drivers. However, we believe there are selected circumstances where it can be an important contribution to timely symptom management, provided all the following are true:
    1. There is a foreseeable distressing circumstance that can be unambiguously identified by all of the health professionals seeing the patient (including those out of hours and without ‘specialist’ experience)
    2.The medication choice and dose required is similarly foreseeable, unlikely to change, and can be safely initiated by all of the health professionals seeing the patient without additional expertise
    3.The initiation of the syringe driver reliably triggers a timely review by an appropriate clinician
    4.The patient and/or family is aware of the foreseeable need for a syringe driver, any concerns have been explored by an experienced practitioner and the anticipatory prescription done in accordance with their expressed wishes/preferences to achieve symptom control in their preferred place of care.
    Local service design will influence whether or not these criteria can be met. In our locality, patients have access to a community palliative care nurse 24hrs a day, changed circumstances are rapidly fed back by carers in the same community palliative care hub, and changes to regular medication doses can be identified because all community se...

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