52 e-Letters

  • 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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  • ‘Future Care Planning’ - perhaps the way forward?

    I approve of the direction-of-travel of the approach in Wales, which it seems to me is more reflective and encompassing of the complexity of end-of-life than is the now widely-adopted ‘ReSPECT’ in England. The term Future Care Planning as used in Wales, explicitly includes planning made when a patient lacks capacity – for example, if the planning takes place when a patient is ‘comatose’ or ‘deeply unconscious’. Whereas the ReSPECT process, generates a main ReSPECT form (ref 1) which tells readers in its section 1 ‘The ReSPECT process starts with conversations between a person and a healthcare professional’. So, presumably any planning ahead which is only embarked on after a patient has already become unable to engage in conversation, should not be captured by either the ReSPECT process or by the ReSPECT form.

    I believe that many NHS Trusts in England, in adopting ReSPECT have moved too far in the direction of trying to create a form which seeks to be ‘all things to all readers’ - whereas in Wales, as we can read in the paper by Taubert and Bounds ‘The approach seeks to cater for the disparate need of the Welsh population; there is not merely one format for multiple scenarios, but a choice of approaches, communication strategies and documents to suit bespoke needs.’.

    I have only two issues with the paper. One is this sentence, which is in fact from the European Association for Palliative Care definition of ACP: ‘It encourages individuals to identify a person...

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  • Another component to health economics in end of life care in the UK

    Diernberger and colleagues give an effective review of the importance of considering how health economics apply to end of life care. I hope their message is heard clearly.
    In the UK there is another dynamic that requires exploration. The majority of palliative care services rely on local charities. It would follow that wealthier areas have greater charitable donations and therefore can offer better services.
    So alongside our evaluation of the health economics at the end of life we also need to reflect on the risk that the inverse care law applies. Do people dying in wealthier areas receive better services than those living in more deprived areas because those charities have greater support?
    It would seem an important research question for us to answer

  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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