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...
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 treatment that has been prescribed to patients in a good performance and fit for therapy according to international study standard might decease within 30 days after the last dose of chemotherapy [3]. Weighing the pros and cons of palliative systemic treatment with the patient seems key in finding the treatment solutions for individual patients. Whether the optimal balance is found by individual clinicians might be appraised by comparison with other clinicians and clinics in similar situations.
We plea for deletion of the term inappropriate in relation to tumor-directed therapy as part of end-of-life care, as renouncing tumor-directed therapy might be as inappropriate. If palliative systemic treatment is started under conditions as stated in (international) standards, inevitably some patients will die within 30days.
References:
1. Boddaert, M.S., et al., Inappropriate end-of-life cancer care in a generalist and specialist palliative care model: a nationwide retrospective population-based observational study. BMJ Support Palliat Care, 2020.
2. Neuberger, J., C. Guthrie, and D. Aaronovitch, More care, less pathway: a review of the Liverpool Care Pathway. Department of Health, 2013.
3. Burgers, J.A. and R.A. Damhuis, 30-day mortality after the start of systemic anticancer therapy for lung cancer: is it really a useful performance indicator? ERJ Open Res, 2018. 4(4).
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...
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 personal representative ...’. I consider it inappropriate, even if it is ‘convenient for ‘the NHS’’, to try and impose the identification of a single ‘representative’ (even setting aside that I’m not clear what ‘representative’ implies, especially in the context of decision-making) within the ranks of relatives and family-carers - ‘hierarchy’ is not an easy fit within many families. However, the paper does make it clear that in Wales the approach has gone beyond, or differs from in some ways, the EAPC definition of ACP – what I am unsure of, is whether Wales has avoided attempts to ‘identify or nominate’ a single person as what I will here describe as ‘a ‘senior or main’ contact or family-carer’ (unless, of course, the patient wishes to do that: my reservations are about situations when a person is being equally-supported by several different people, such as by three daughters).
My second issue, is with this sentence: ‘Some patients may wish to take control and fill in and cosign their own advance decision form, while others may prefer their clinician to help them set this up.’. I find the word ‘cosign’ misleading and inappropriate in the context of a written Advance Decision: an ADRT should be signed by the patient and witnessed by another person. That isn’t in my mind ‘cosigning’. Some patients might decide to create their own written Advance Decision(s), in line with the requirements of sections 24-26 of the Mental Capacity Act, and some patients might have their signature witnessed by someone other than a clinician – both are allowed by the MCA’s requirements for ADRTs. Asking a doctor, or nurse, to help you create a written ADRT, is of course an option and I believe clinicians should then help: but, that does not amount to the patient ‘not taking control’ of the ADRT – if the patient isn’t in control of his or her ADRT, I suspect the document would not ‘stand up’ legally.
I entirely agree with the authors when they state: ‘Advance and future care planning is a complex topic area for healthcare professionals, patients, carers and policymakers alike. It is not likely that a ‘one-size fits all’ approach will ever meet the different needs of the population, and so different forms and approaches are offered in Wales.’.
As it happens, I have recently published a piece (ref 2) which investigates the complexity of planning ahead, especially for end-of-life and in the context of the MCA : one of my ‘conclusions’ is that ACP or FCP can only be useful, and cannot be ‘a panacea’.
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
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...
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 specifically to enable quality improvement, based on agreed best practice, and we understand from audit participants that their data is being reviewed locally after each cycle to inform quality improvement activity. It may be worth reviewing the current NACEL good practice case studies on the NACEL webpages where audit participants report that NACEL data has been used to this effect. To add to this, 81% of acute hospital audit participants reported in the last cycle that an action plan was produced and monitored using NACEL findings. The issue here would appear to be that NACEL is currently an annual data collection (as commissioned by the funders, NHS England and NHS Improvement and the Welsh Government), and doesn’t provide the continuous more rapid flow of data as suggested by the article which would be more useful. On this note, when NACEL is re-tendered, the funders are likely to ask for such an audit (more frequent reporting with key metrics only reported). This is likely to be a combination of the current Case Note Review and Quality Survey (survey of bereaved carers) audit elements.
One of the key bonuses of the NACEL data is that it provides comparison with other providers. It also helps to identify areas for improvement at local level and helps to inform business cases with robust evidence on key metrics. For example, we understand that many providers have used the workforce findings to pursue the case for additional SPCT funding, even for the ‘adequate’ coverage of 8 hours per day, 7 days per week specialist palliative care team coverage, of which 64% of organisations lack.
NACEL has the added advantage of the NACEL Quality Survey, which provides feedback directly from bereaved carers, providing intelligence on the needs of families and others and families and others’ experience of care, both of which being identified as needing additional development with 20% judging quality of care and support as ‘poor’ or ‘fair’. We feel that more continuous reporting would need to take in the views of bereaved carers more systematically.
Thank you for keeping us up to speed with developments in your neck of the woods. It may well be useful if we could formally consult with you once the scope and timings of the of the NACEL re-tender have been agreed with the funders.
Kind regards
Suzanne Kite and Elizabeth Rees
NACEL Clinical Leads
Acknowledgement: with thanks to the NHS Benchmarking NACEL team for support in drafting this response.
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...
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 morphine arm as Williams says). The fact that no benefit was seen for other secondary outcomes is unsurprising; trials are not powered to detect statistically significant differences in secondary outcomes. It is, however, highly relevant that there was greater improvement in worst breathlessness - , the measure most likely to reflect the most beneficial outcome for patients [6] - in people with the most severe breathlessness at baseline, an effect amplified in those who had COPD as their dominant cause of chronic breathlessness in the morphine arm. [paper in preparation] This finding has been further supported by a recently published trial comparing three months of oral low dose sustained release morphine compared with placebo in people with COPD, which showed a statistically significant improvement in worst breathlessness in the sub-group with the most debilitating breathlessness.[7] In this trial, benefit on quality of life (their primary outcome) was also seen to be cost-effective.[8]
2. “The best evidence is for 10-30mg daily de novo low dose oral sustained release morphine”
We stand by our statement; the best evidence relates to low dose oral sustained release morphine. The amount and quality (in terms of study design) of data regarding this preparation is greater than for any other: a standardised dose-titration and pharmacovigilance study,[9] an adequately powered crossover trial showing benefit, [10] one [1] (and now three [7;11]) parallel group randomized controlled trials, with a detailed safety analysis. [12] Since we published our review, it is also now the only morphine preparation with placebo-controlled repeat-dose data for more than 7 days. [7.11] Although there are still questions about the characteristics of those for whom low dose oral sustained release morphine may benefit, this bank of information about the safety-effectiveness balance forms the most robust basis we have to inform current clinical decision-making.
3. “This should be considered the current standard of care”
Williams notes, “…both authors declare payments from Mayne Pharma, what is not stated, is that Mayne Pharma produces the sustained release morphine preparation that is specifically named in this narrative review.”
The recommendation that sustained release morphine should be the standard of care arises from the fact that this is the only preparation with a license for the indication of chronic breathlessness anywhere in the world. Although Kapanol™ is not available in many countries and no other preparation has a license as yet, it makes sound clinical sense to use this licensing as the blueprint. The Therapeutic Goods Administration of Australia had access to all study data, including all sub-group analyses from Currow et al. [1] Their decision to provide a regulatory license for Kapanol™ 10mg to 30mg daily for chronic breathlessness was independent of both Mayne Pharma and the authors. Of note, the two most recent trials [7;11] of sustained release morphine did not use Kapanol™.
Williams cites the problem of global over-prescription of opioids as the cause of her concern. It is precisely for this reason that it is absolutely necessary that the indication, dose, cautions and contraindications – based on the best evidence we have to date - are regulated.
Reference List
(1) Currow DC, Louw S, McCloud P, Fazekas B, Plummer J, McDonald C et al. Regular, sustained-release morphine for chronic breathlessness: a multicentre, double-blind, randomised, placebo-controlled trial. Thorax 2019; Epub ahead of print(26th September).
(2) Jennings AL, Davies AN, Higgins JP, Gibbs JS, Broadley KE. A systematic review of the use of opioids in the management of dyspnoea. Thorax 2002; 57(11):939-944.
(3) Ekstrom M, Nilsson F, Abernethy AA, Currow DC. Effects of opioids on breathlessness and exercise capacity in chronic obstructive pulmonary disease. A systematic review. Ann Am Thorac Soc 2015; 12(7):1079-1092.
(4) Barnes H, McDonald J, Smallwood N, Manser R. Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness. Cochrane Database Syst Rev 2016; 3:CD011008.
(5) Ekstrom M, Bajwah S, Bland JM, Currow DC, Hussain J, Johnson MJ. One evidence base; three stories: do opioids relieve chronic breathlessness? Thorax 2018; 73(1):88-90.
(6) Lovell N, Etkind SN, Bajwah S, Maddocks M, Higginson IJ. To What Extent Do the NRS and CRQ Capture Change in Patients' Experience of Breathlessness in Advanced Disease? Findings From a Mixed-Methods Double-Blind Randomized Feasibility Trial. J Pain Symptom Manage 2019; 58(3):369-381.
(7) Verberkt CA, van den Beuken-van Everdingen MHJ, Schols JMGA, Hameleers N, Wouters EFM, Janssen DJA. Effect of Sustained-Release Morphine for Refractory Breathlessness in Chronic Obstructive Pulmonary Disease on Health Status: A Randomized Clinical Trial. JAMA Intern Med 2020; 180(10):1306-1314.
(8) Verberkt CA, van den Beuken-van Everdingen MHJ, Dirksen CD, Schols JMGA, Wouters EFM, Janssen DJA. Cost-effectiveness of sustained-release morphine for refractory breathlessness in COPD: A randomized clinical trial. Respir Med 2021; 179:106330.
(9) Currow DC, McDonald C, Oaten S, Kenny B, Allcroft P, Frith P et al. Once-daily opioids for chronic dyspnea: a dose increment and pharmacovigilance study. J Pain Symptom Manage 2011; 42(3):388-399.
(10) Abernethy AP, Currow DC, Frith P, Fazekas BS, McHugh A, Bui C. Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. BMJ 2003; 327(7414):523-528.
(11) Johnson MJ, Cockayne S, Currow DC, Bell K, Hicks K, Fairhurst C et al. Oral modified release morphine for breathlessness in chronic heart failure: a randomized placebo-controlled trial. ESC Heart Fail 2019; 6(6):1149-1160.
(12) Johnson MJ, Sbizzera I, Fairhurst C, Fazekas B, Agar M, Ekstrom M et al. No excess harms from sustained-release morphine: a randomised placebo-controlled trial in chronic breathlessness. BMJ Support Palliat Care 2019.
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...
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 significant benefit for sustained release morphine vs placebo for the following outcomes: intensity of breathlessness experienced now; intensity of worst, best and average breathlessness; breathlessness unpleasantness, functional status; health related quality of life in participants and caregivers or any participant treatment preference.
The paper also demonstrated that those using sustained release morphine were having higher total morphine doses per day.
In addition, the side effect profile was significantly higher in the treatment group. With more constipation, nausea, vomiting and fatigue.
It is concerning that a narrative review can put such a positive spin on using regular sustained release morphine and neglect to report the negative findings from 1a quality evidence, especially when there are such issues globally with over prescription of opiates.3
It is worth noting that both authors declare payments from Mayne Pharma, what is not stated, is that Mayne Pharma produces the sustained release morphine preparation that is specifically named in this narrative review.
Sincerely Dr Gwennan Williams
References.
01. Johnson MJ, Currow DC. Opioids for breathlessness: A narrative review. BMJ Support Palliat Care 2020;10:287–95. doi:10.1136/bmjspcare-2020-002314
02. Currow D, Louw S, McCloud P, et al. Regular, sustained-release morphine for chronic breathlessness: A multicentre, double-blind, randomised, placebo-controlled trial. Thorax 2020;75:50–6. doi:10.1136/thoraxjnl-2019-213681
03. Volkow ND, Blanco C. The changing opioid crisis: development, challenges and opportunities. Mol Psychiatry 2021;26:218–33. doi:10.1038/s41380-020-0661-4
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.
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 lockdown finishes, it is too good not to use on the right occasions”
“Very useful and enjoyable Don’t want to lose this opportunity for support”
However, there is also excitement at the prospect of being able to return to the hospice in person.
“This is wonderful technology but cannot wait for the hospice to be opened for our Wellbeing classes and to come in person!”
We conducted a service evaluation of our virtual video interactions with patients after the first wave of COVID-19. 92% of Wellbeing attendees stated that they be happy to communicate with healthcare staff at our hospice via a video link in the future. In a separate service evaluation, it was noted that the most common reasons for patients wanting to attend the virtual Wellbeing sessions were for emotional benefits (63%), contact with others (58%), contact with the hospice (56%) and to receive support for their medical condition (44%).
Although this way of providing support to patients with life-limiting illness may not be the preferred method, we have been surprised by the enthusiasm of the patients and their keen uptake of the sessions. Alongside a return to face-to-face sessions when possible, we plan to continue to offer virtual Wellbeing sessions going forward given the great success of the programme and also the extending the reach of our service to support both patients and carers who may not be able to attend the hospice in person. Maintaining support and a link with the hospice during the pandemic and providing a form of social interaction for our patients who have been shielding at home during the pandemic has been really appreciated and valued.
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...
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 (let alone treatment of dehydration) by NICE. So, again there is an issue about collating these data.
4. Study duration – end-of-life studies should follow up the patient until death, since related problems are often more prevalent closer to death (e.g. “terminal agitation”, audible upper airway secretions), and survival has to be a major outcome.
Finally, we agree with the authors’ assertion that “definitive studies are urgently needed to determine whether CAH has any impact on patients’ survival or symptoms”. However, such studies are expensive, and our failure to undertake a definitive study relates to a lack of funding (and not a lack of willing)!
[1]. Kingdon A, Spathis A, Brodrick R et al. What is the impact of clinically assisted hydration in the last days of life? A systematic literature review and narrative synthesis. BMJ Support Palliat Care 2021; 11: 68-74.
[2]. Good P, Richard R, Syrmis W et al. Medically assisted hydration for adult palliative care patients. Cochrane Database of Systematic Reviews 2014, Issue 4. Art. No.: CD006273.
[4]. Davies AN, Waghorn M, Webber K et al. A cluster randomised feasibility trial of clinically assisted hydration in cancer patients in the last days of life. Palliat Med 2018; 32: 733-43.
[5]. Cerchietti L, Navigante A, Sauri A et al. Hypodermoclysis for control of dehydration in terminal-stage cancer. International Journal of Palliative Nursing 2000; 6: 370-4.
[6]. Bruera E, Hui D, Dalal S et al. Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol 2013; 31: 111-8.
[7]. National Institute for Health and Care Excellence. Intravenous fluid therapy in adults in hospital; 2013 (updated 2017). Available at: http://guidance.nice.org.uk/CG174 [Accessed 31 March 2021]
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...
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 intent was associated with improved physical health, pain and fatigue. Given these results, it appears that curative regimen also represented the optimal palliative chemotherapy!
The authors state that favorable outcomes of patients treated with curative intent could be explained by a selection bias leading to enroll more vulnerable patients in the palliative intent treatment. This is indeed supported by the results showing more acute myeloid leukemia, refractory diseases and earlier relapses in the palliative intent arm. Characteristics of acute lymphoblastic leukemia relapses (i.e. bone marrow or central nervous system involvement), first line treatment or performance status at enrollment were not described although these could represent confounding factors.
This work represents a unique contribution to our knowledge about PPC recipients for leukemia. However, we would like to discuss the author’s conclusion that “curative approach may be a reasonable option for patients with acute leukemia even when prognosis is poor”. Disease burden and treatment toxicity may represent more important determinants of QoL than the physician intent.
We would rather advocate that there should be no situation in which physicians should choose between palliative care and effective chemotherapy. Further research is needed to optimize and personalize the treatment plan for patients with advanced hematological malignancies.
1 - Atun R, Bhakta N, Denburg A, et al. Sustainable care for children with cancer: a Lancet Oncology Commission. Lancet Oncol. 2020;21(4):e185-e224. doi:10.1016/S1470-2045(20)30022-X
2 - Salaverria C, Plenert E, Vasquez R, Fuentes-Alabi S, Tomlinson GA, Sung L. Paediatric relapsed acute leukaemia: curative intent chemotherapy improves quality of life [published online ahead of print, 2021 Jan 17]. BMJ Support Palliat Care. 2021;bmjspcare-2020-002722. doi:10.1136/bmjspcare-2020-002722
3 - Mahmood LA, Casey D, Dolan JG, Dozier AM, Korones DN. Feasibility of Early Palliative Care Consultation for Children With High-Risk Malignancies. Pediatr Blood Cancer. 2016;63(8):1419-1422. doi:10.1002/pbc.26024
4 - Kaye EC, Friebert S, Baker JN. Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families. Pediatr Blood Cancer. 2016;63(4):593-597. doi:10.1002/pbc.25848
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...
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, were it can cause nausea, biliary gastritis, reflux and aspiration, notably in the supine position. However GJ-tubes are much more demanding in terms of tube maintenance. The title suggests that outcome of both types were assessed – could the authors’ please elaborate on the differences reported by patients and can one be recommended over the other?
The introduction of the Enfit standard has resulted in additional problems with the connectors reducing flow and causing obstruction, and patients having difficulties obtaining matching drainage bags. This is proving such a problem that we are considering suspending this procedure. What advice do the authors have?
Malignant bowel obstruction precludes the administration of oral contrast and it is frequently associated with large-volume ascites, which can result in debilitating leakage. What method was used to identify the colon during the procedure and how is co-existing ascites managed?
In our experience patient selection and counselling is crucial. Patients – and indeed the referring team – rarely fully understand that the patient is limited to a comfort-based intake of fluids and requires additional parenteral nutrition. Leakage of gastric content is a frequent problem, leading to skin excoriation and break down of the peri-stomal tissues, which blights patients’ lives if not checked rapidly. “Infection” should be treated in the first instance with topical creams combining an appropriate antibiotic / antifungal and a steroid after a wound swab and culture, not with systemic antibiotics. We routinely apply an alginate (Flaminal Hydro, Flen Health, London, UK) for two weeks after the procedure to promote healing and reduce the risk of infection, and offer an open-accesss drop-in clinic for all gastrostomy patients. Do the authors’ have any advice for post-procedural wound care, which is crucial in reducing complications?
What were the lessons learned from tubes “falling out” and how were these managed? In contrast to gastrostomy, gastro-jejunostomy catheters require image-guidance to be reintroduced into the duodenum.
Hoping to be referenced in future projects that were designed collaboratively,
Sincerely,
The Christie Interventional Radiology Team
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...
Show MoreI 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...
Show MoreDiernberger 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
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...
Show MoreDear 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:
Show More1. 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...
Dear Editor
Show MoreI 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...
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...
Show MoreDear 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...
Show MoreResearch 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.
Show MorePatients 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...
Dear Editor,
Show MoreWe 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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