18 e-Letters

published between 2020 and 2023

  • Doubts about some quantitative information

    With much interest I have read this article. Unfortunately I noticed various inconsistencies within 1) the tables as well as in 2) the textual description about quantitative results:

    1) Tables

    Table 3 Patient clinical characteristics
    a. Main diagnosis SAH/Other: 12(5) should read 12(4), assuming 12 is correct;
    b. Main diagnosis HU/Other: 14(6) should read 14(5), assuming 14 is correct;
    c. Disease modifying treatment in the 3 months prior to admission*: The numbers add up to exactly the given N. Why *?
    d. Disease modifying treatment in the 3 months prior to admission*: Yes. Currently 85(31), 67(24) and 92(34). Assuming absolute figures are correct, the percentages should read: (32), (25) and (35) respectively;
    e. Mental status (oriented) on admission: Unknown for SAH and HU. Currently 21(7) and 41(15). Assuming absolute figures are correct, the percentages should read (8) and (16) respectively.

    Table 4 Reported multidimensional care needs on admission
    It seems that the figures stated under 'Domain of care needs noted on admission' do not coincide with the figures under 'No of dimensions of care needs by patient'. Two examples. There are 267 in the need of Physical care within VDH. However when adding up the Physical dimensions below, the total is 269 (76+65+34+19+42+15+6+12). Second example: There are 48 in need of Spiritual care within HU. However when adding up the Spiritual dimensions below, th...

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  • Assisted dying compatibility with palliative care is an illusion

    Cohen and Chambaere imply that palliative care (PC) and ‘assisted dying’ (AD) will develop a loving relationship, albeit with compulsory marriage guidance.(1)

    Claiming existing ‘integrated and synergistic’ links contradicts the fact that growth in PC services has stalled in Belgium and the Netherlands since 2012.(2) This assumes expert PC teams are accessible. In the UK, an estimated 118,000 people in 2017 could not access expert PC,(3) and only 15% of Canadians have access to publicly funded PC.(4) Even when PC is involved, the median duration of specialist PC involvement is 19 days,(5) barely enough time to resolve physical symptoms, let alone a wish to die.(6) Claiming PC or hospice involvement in AD patients is meaningless without knowing the expertise and length of involvement.

    Suggesting that because some PC teams are involved in AD the rest must follow, ignores the depth of disquiet. Even 15 years after Oregon’s AD legislation, two thirds of hospices were refusing to participate.(7) The authors point to a paper which surveyed staff from two Canadian hospices.(8) This exposed profound concerns amongst staff about participation in AD but ignored the insidious impact of government mandates forcing hospice involvement, while glossing over reports of clinical complications and concerns about patients’ capacity and the steadfastness of their decision. There is no mention that Canadian AD legislation has removed many safeguards such as the 10-day reflectio...

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  • Could topical ophthalmic beta-blockers be given per orum for this indication?

    As we use atropine and pilocarpine eye drops orally, could betaxolol a beta-1 selective beta-blocker be used to reduce stringy saliva? Especially when swallowing is impaired?

  • ‘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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  • 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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