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...
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, the total is 42 (10+21+4+7).
Table 5 Admission characteristics
a. Type of admission/HU/Unknown: 7(2) should read 7(3), assuming 7 is correct;
b. Purpose of admission/SAH/Other and Unknown: 7(2) and 7(2), should read 7(3) and 7(3) assuming absolutre figures are correct;
c. Initiatorof admission. The totals do not concide with the N's. Example VDH: 102+99+66+74 = 341 whereas N=267. This is mismatch is valid for SAH and HU as well.
2) Textual description
Page 1. Abstract, Results: "... social needs by 53%, 52% and 62%", should read 53%, 53% and 62% (conditional to earlier remarks about table 4);
Page 1. Abstract, Results: "24%, 29% and 27% ...:", should read 24%, 30% and 26% (conditional to earlier remarks about table 4);
Page 3. Demographic and clinical characteristics: dublication of term 'clinical characteristics' (see next heading in text 'Clinical characteristics');
Page 3. Demographic and clinical characteristics: "The mean age ....77 and 79 years", should read 75 and 77(or 78) years, assuming information in Table 2 is correct
Page 3. Demographic and clinical characteristics: "39%-41% of patients were married ...", should read 39%-46% or 78 years, assuming information in Table 2 is correct;
Page 3: Admission characteristics: "... VDHs (45% and 45%) and HUs (38% and 52%)", should read (44% and 45%) and (41% and 50%) respectively, assuming information in Table 5 is correct;
Page 4: Admission characteristics: " ... care limitations (7%-25%), should read (11%-31%) , assuming information in Table 5 is correct.
Although the conclusions might be unaffected by those (sometimes minor) inconsistencies, the sheer amount of those, may need need clarifications and/or corrections. It would be a pity if such an important study and publication are effected by these inconsistencies.
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...
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 reflection period, making AD quicker to obtain than most wheelchairs.
The suggestion that PC’s refusal to engage with AD is abandoning patients is a cynical ploy. The authors ask whether PC professionals are ‘uniquely positioned to evaluate legal requirements for MAiD such as the nature of suffering or the reason for the request’. There is no standard for suffering and no non-legal healthcare professional has the skill or training to make a dispassionate legal decision. Their very compassion exposes them to bias and fallibility such that they overlook coercion and manipulation. Switzerland is the only AD legislature in Western Europe to show some growth in PC services,(2) and yet is largely a non-medical model. PC teams should be free to care for all patients without the burden of AD involvement.
AD is a legal right in Canada, but PC is not and it is no surprise that PC remains deeply uncomfortable and suspicious of direct involvement with AD. Using healthcare to legitimise AD and exploiting palliative care to grease the process is disingenuous.
References
1) Cohen J, Chambaere K. Increased legalisation of medical assistance in dying: relationship to palliative care. BMJ Support Pall Care, 2022; http://dx.doi.org/10.1136/bmjspcare-2022-003573
2) Arias-Casais N et al, Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years. Palliat Med, 2020; 34(8): 1044-56.
3) Hospice UK. Hospice care in the UK 2017: from numbers to insight. London: Hospice UK, 2017.
4) Access to Palliative Care in Canada. Ottowa: Canadian Institute for Health Information, 2018, p6.
5) Jordan RI, Allsop MJ, ElMokhallalati Y, Jackson CE, Edwards HL, Chapman EJ, Deliens L, Bennett MI. Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Medicine 2020; 18: 368.
6) Voltz R, Boström K , Dojan T, Rosendahl C, Gehrke L, Shah-Hosseini K, Kremeike K. Is trained communication about desire to die harmful for patients receiving palliative care? A cohort study. Pallia Med2022, Vol. 36(3) 489–497
7) Campbell CS, Cox JC. Hospice-assisted death? A study of Oregon Hospices on death with dignity. Am J Hospice Palliat Med, 2012; 29(3): 227-35
8) Mllett J, Macdonald ME. Medical assistance in dying in hospice: a qualitative study. BMJ Support Pall Care, 2021; http://dx.doi.org/10.1136/bmjspcare-2021-003191
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?
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.
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.
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
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...
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 ever before. This is particularly the case in the fields of neonatology, cardiology and genetics. Accordingly, the population in need of PPC is ever-growing. This diverse group ranges from extreme preterm infants, who may spend months living in intensive care units, to teenagers, who often require transition from PPC to adult palliative services.
Our review of the literature revealed that there is paucity of robust research regarding barriers to accessing paediatric palliative care. Tobin et al report that prognostic uncertainty is often a deterrent to making a referral for hospice care. (1) We believe this to be especially true in paediatrics. Due to the rare nature of many of the conditions, it is often unclear at birth what the quality and duration of a child’s life will be. Even when prognosis is understood, there is often a reluctance to refer to available services. Ideally, PPC should be delivered in parallel to active disease-focused care. In reality, many children are referred in the final days or hours of life, if at all. In our experience, the resistance to involving PCC can come from both families and from healthcare professionals. We believe this largely stems from a misconception of the role of PPC, and believe that education and awareness raising is essential to overcome this barrier to care. This has been reported in the literature, with one group finding that education, in addition to direct and positive interactions with PPC teams facilitated the acceptance and integration of PPC into patient care. (4)
Tobin et al also found that adults with non-malignant disease, specifically heart disease, cystic fibrosis and those with intellectual impairment were less likely to be referred to hospice services. We expect that this is likely similar in the paediatric population due to stronger ties traditionally between oncology services and PPC. In contrast to the adult population, we think it is unlikely that socio-economic group or ethnic background contribute to inequality in access to care in our context. Having said this, in Ireland, there is a geographical inequality. Due to the lack of a national service there is inequity of access, with more direct access to specialised PPC for children receiving care in the tertiary paediatric centres, both of which are based in Dublin. The need to enhance and expand the existing services in Ireland has been recognised (5). While awaiting commitment of funding, it is essential to collaborate with and support all healthcare workers who are providing PPC to children in a variety of settings across the country.
Infants and children have unique challenges and needs when it comes to paediatric palliative care. As with the adult population, education, innovation and collaboration are essential in improving access to PCC, as well as investment of funding and expansion of existing services. Building on the work by Tobin et al, we advocate for further research to be completed to better understand what factors may be limiting access to hospice care for the paediatric population, so that care can be provided equally to all people, of all ages.
References:
1. Tobin J, Rogers A, Winterburn I, et al Hospice care access inequalities: a systematic review and narrative synthesis BMJ Support Palliat Care Published Online First: 19 February 2021 doi: 10.1136/bmjspcare-2020-002719
2. A Guide to Children’s Palliative Care (Forth Edition) 2018 Together for Short Lives. Accessed April 21 at: https://www.togetherforshortlives.org.uk/wp-content/uploads/2018/03/TfSL...
3. Hain R, Heckford E, McCulloch R. Paediatric palliative medicine in the UK: past, present, future
Arch Dis Child 2012;97:381-384.
4. Verberne, L. M., Kars, M. C., Schepers, S. A. et al. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC palliat care, 2018 17(1), 23.
5. A national model of care for paediatric health services in Ireland (Chp 39) Health Servcie Executive. Accessed April 21 at: https://www.hse.ie/eng/services/publications/clinical-strategy-and-progr...
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
Show MoreIt 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...
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...
Show MoreAs 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?
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...
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...
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
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...
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.
Show MorePaediatric 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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