To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patient...
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patients undergoing IPC and pleurodesis.
In general IPC placement was well tolerated and patients liked that having an IPC meant that there was no need to return to hospital for further thoracocentesis. Care at home, with the support of District Nurses was greatly appreciated, but there were occasional frustrations. For some, placement of an IPC led to a gradual reduction of fluid drainage and pleurodesis leading to tube removal. . For some, subsequent tube removal did not change quality of life, for others it felt liberating.
For those undergoing chest drain and pleurodesis, there was some dissatisfaction that this necessitated a hospital stay and the chest drain bottle was inconvenient, but improvements in quality of life were worth the effort. We asked patients to reflect on the journey they had taken and whether they would have chosen the same pleural interventions again (multiple therapeutic thoracocenteses versus pleurodesis or IPC). Patients fell into two categories: those who thought that the decision should be made by the medical team and those who were keen for a particular option such as IPC or intermittent drainage.
Conclusions
While our findings with regards to removal of pleural fluid are similar to Twose et al’s, our data give some interesting insights into the experiences of patients who have undergone IPC or pleurodesis. Both procedures have burdens and benefits and it is important that patients are guided by clinicians so that they can make informed choices with regards to treatments.
Table 1: Perceptions of patients after IPC placement or talc pleurodesis
Perception of patient Exemplar quote(s)
IPC
Placement was generally well tolerated “I just felt pushing.” (Patient 1)
“It wasn’t very pleasant, but it was pain-free, it was just a lot of, sort of, faffing position-wise, and pushing, and shoving, and prodding…” (Patient 7)
No need to return to hospital “I wouldn’t want to stay in hospital unless I really had to.” (Patient 1)
Community support “…there was a hiccup the first weekend, the district nurses didn’t turn up.” (Patient 6)
IPC leading to pleurodesis Initially, it was every couple of days, but now, for the last few weeks, or even four weeks, it’s been weekly” (Patient 5)
Talc Pleurodesis
Inconvenience Interviewer: “And for the sake of coming into hospital and spending days in hospital was that transformation sort of worth it?”
Respondent: “Oh very definitely, yeah, yeah.” (Patient 4)“I don’t recall any particular pain from it, it was just the fact you wanted to go to the loo you’ve got to somehow drag this bucket around with you.” (Patient 4)
Decision making
Medical team lead on decision making “Medical people, they should know which you need most.” (Patient 2)
Patient taking lead on decision making “…you may have to have regular visits all the time, and that means, you know, constant interference. I mean, it’s not the most pleasant experience, and there’s a degree of pain in it…You need something a bit more permanent…” (Patient 5)
REFERENCES
1 Twose C, Ferris R, Wilson A, et al. Therapeutic thoracentesis symptoms and activity: a qualitative study. BMJ Supportive & Palliative Care 2021 doi:10.1136/ bmjspcare-2020-002584
ACKNOWLEDGEMENTS
We are grateful to the patients who participated in this study.
CONTRIBUTORS
PP conceived the study. RJ, HS and NP made substantial contribution to its design. RJ collected the data. All authors contributed to the analysis and interpretation of the data and critically revised drafts of the paper. They also read and approved the final version of the manuscript. PP is the guarantor.
FUNDING
Funding for this study was received from the Gloucestershire Hospitals Chest Fund and the Gloucestershire Hospitals NHS Foundation Trust Research and Innovation Forum Fund.
COMPETING INTERESTS
All authors have completed the Unified Competing Interests form at http://www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author). There are no competing interests.
APPROVALS/ETHICS
The study was approved by Gloucestershire Research Support Service, the Sue Ryder Research Governance Group, the National Research Ethics Service Committee West Midlands (REC Reference 16/WM/0222).
PROVENANCE AND PEER REVIEW
Not commissioned; externally peer reviewed.
DATA SHARING STATEMENT
Unpublished data are held by Sue Ryder Leckhampton Court Hospice.
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
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...
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).
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
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
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]
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patient...
Show MoreCohen 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 MoreIt 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...
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 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...
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.
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
We read with particular interest the recent systematic review and narrative synthesis of clinically assisted hydration in the last days of life [1]. Unsurprisingly, the authors concluded that “there is currently insufficient evidence to draw firm conclusions on the impact of CAH in the last days of life”, which supports the findings of previous reviews [2,3]. We agree with their conclusion, but would like to make some comments on the “quality” / applicability of some of the included (and excluded) studies.
Our concerns relate to:
1. Study type – end-of-life care should be evidence based, and the “gold standard” remains the randomised controlled trial (RCT).
2. Study population – our study [4] excluded patients with dehydration (and with contraindications to CAH), but the Cerchetti et al RCT [5] involved patients with dehydration and renal failure, and the “excluded” Bruera et al RCT [6] specifically involved patients with dehydration. Hence, there is an issue about collating these data, and, importantly, extrapolating these data to the wider population.
3. Study intervention – our study [4] used a variable volume of fluid, based on the patient’s weight (and in accordance with NICE guidance) [7], but the Cerchetti et al RCT [5], and the Bruera et al RCT [6], both used a fixed volume of fluid (e.g. 1 L / day). The rationale for this volume of fluid is unexplained, but it is much less than recommended for maintenance of hydration...
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