eLetters

42 e-Letters

  • Response from the National Audit of Care at the End of Life (NACEL)

    We are responding to the recent article in the June 2021 edition of the online BMJ Supportive & Palliative Care Hospital deaths dashboard: care indicators article as the NACEL Clinical Leads.

    Primarily, we were pleased to see that the NACEL metrics and audit themes had been used as the starting point for the dashboard. The scope of NACEL is to audit against the NICE Quality Standards and Guidelines, and the Five Priorities for Care, representing best practice in adults dying in hospital.

    We would concur with the theme of the article that continuous quality improvement, and thematic feedback to clinical teams is a good thing, which must be promoted. As you are aware, NACEL is not commissioned to provide QI support directly to acute hospitals but does provide hospitals with the evidence and the tools for QI activity.

    We would agree that the “less onerous” approach is usually good, and whilst NACEL initially set off in the first cycle with many data items to collect, we listened to feedback in subsequent years and pulled back significantly on the metrics requested. We can assure you that the NACEL Steering and Advisory Groups both aspire towards less data burden, and the ask of acute providers is reviewed after each audit cycle. In addition, the article also mentions that NACEL is ‘too onerous’ and provides ‘little specific data that can be used for continuous quality improvement’. We would wish to counteract this in that the metrics are chosen spe...

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  • In response to Williams

    Dear Editor
    We note the concerns expressed by Dr. Williams regarding our article about opioids for breathlessness. In particular she takes highlights three statements:
    - “There is 1a evidence to support the use of opioids for breathlessness.”
    - “The best evidence is for 10-30mg daily de novo low dose oral sustained release morphine”
    - “This should be considered the current standard of care”

    We address these concerns point by point:
    1. Level 1a evidence.
    a. Williams states: “The 1a evidence that the authors are referring to here is Dr Currow’s own paper: Regular sustained-release morphine for chronic breathlessness: a multicentre, double blind, randomised, placebo-controlled trial. [1]"
    To qualify as level 1a evidence, there needs to be evidence from systematic reviews and meta-analyses – a single trial is only level 1b. We clearly reference four meta-analyses, all in favour of opioids.[2, 3, 4, 5]
    b. She goes on to say: “What they neglect to mention when citing this paper (Currow et al [1]) is that it clearly found that there was no superiority to using sustained release morphine when compared to placebo.”
    Not only do we state that “There was no benefit for the primary outcome of breathlessness now over placebo”, but we provide a detailed critique of the methodological challenges – including the issue that immediate release morphine was available in both arms and with greater use in the placebo arm (not the...

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  • Hospice Virtual Wellbeing Support during the COVID-19 Pandemic

    We have read with interest your letter about the changing face of day hospices since the onset of the COVID-19 pandemic. We would like to share our experience of support provided by our Wellbeing Centre team during this time which has evolved and developed into what is currently an entirely virtual service. This has been a challenging but also an extremely positive experience with an enthusiastic response from our patients wanting to engage in our extensive virtual offer of hospice wellbeing services.

    In March 2020, we began by offering 3 virtual sessions per week. This has grown exponentially over the year and we are now offering up to 4 sessions per day with a total of 18 sessions per week supporting, on average, 23 patients per day. We have provided multiple types of support including yoga and other exercise classes, guided relaxation, art, Q&A sessions with our doctors, discussion support groups, carers’ groups, management of breathlessness and pain, and anxiety and fatigue management.

    Age range of attendees of the virtual sessions have been between 40 to 90 years old, and from early to late in their disease trajectory. Between April 2020 and April 2021, we had 4,603 attendances with 413 referrals to the service.

    We have conducted service evaluations to evaluate this new way of providing support to our patients and the feedback indicates that patients are keen for support to continue to be provided virtually.

    “Keep at it even after loc...

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  • Opioids for breathlessness? A over estimation of the effectiveness.

    Dear Editor
    I write in response to an article printed in BMJ Supportive and Palliative Care; Opioids for breathlessness: a narrative review.1
    In this review Johnson and Currow strongly advocate for the use of sustained release morphine for breathlessness in the palliative care setting. The paper states:
    - “There is 1a evidence to support the use of opioids for breathlessness.”
    - “The best evidence is for 10-30mg daily de novo low dose oral sustained release morphine”
    - “This should be considered the current standard of care”
    The wording of this article, in particularly the seductive summary boxes, leads the reader to the conclusion that there is superior evidence to support using sustained release preparations of morphine as opposed to the more common approach of using immediate release ‘rescue’ preparations. However, this is not the case.
    The 1a evidence that the authors are referring to here is Dr Currow’s own paper: Regular sustained-release morphine for chronic breathlessness: a multicentre, double blind, randomised, placebo-controlled trial.2 What they neglect to mention when citing this paper is that it clearly found that there was no superiority to using sustained release morphine when compared to placebo.
    In this study, patients were randomised to sustained release morphine or placebo. Both groups were also permitted to take “as needed” immediate release morphine. The study found no sign...

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  • There is a Paediatric Perspective to Hospice Care Access Inequalities

    It was with great interest that we read the recent paper entitled “Hospice care access inequalities: a systematic review and narrative synthesis”.(1) In this paper, the authors report inequality in access to hospice care for several population groups, including those living in rural or deprived areas, certain ethnic subgroups, the oldest of the old, and people with non-malignant diagnoses. They advocate for better collaboration and innovation in order to improve access to hospice care for all members of society. We noted that publications on hospice care for people under 18 years old were excluded from this review. We wish to add to the discussion by sharing some of the unique aspects and challenges of providing palliative care to babies, children and adolescents with palliative care needs.
    Paediatric palliative care (PCC) is an active and total care approach to the care of children with life limiting and life threatening conditions from the point of diagnosis, throughout the child’s life and death.(2) Although it shares many similarities, it is distinct from adult palliative care due to the nature and trajectory of the conditions dealt with, as well as developmental, ethical and family issues. (3)
    As a result of major advances in ICU care, the development of novel treatment and the increased availability of life sustaining treatment, such as dialysis, non-invasive ventilation and nutritional support, children with complex medical needs are living longer than...

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  • 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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