Dr Regnard claims that I 'find comfort in the belief that any sceptic or critic of assisted dying must be driven by religious fanaticism' That is untrue. Last year, I sent him my critique of two prominent unbelieving opponents of AD, Douglas Murray and Kevin Yuill. [1] Far from being 'desperate to claim that assisted dying is safe' I have argued repeatedly (including emails to Dr Regnard) that occasional difficulties in swallowing or absorbing the full oral dose of prescribed AD medication is a strong argument for direct third-party administration, as preferred by over 99% of Canadian AD patients who have a choice.
Although Dr Doré cites a paper as proof that the quality of death in AD is not superior to that in patients requesting but not receiving AD,[2] it actually shows the opposite. "Family members of those choosing [AD] reported greater symptom control, particularly in regard to control over surroundings, better functioning, better energy, and better control of bowel and bladder." He claims that 'in no way is religion mentioned' and 'in no form do I have a paid role, nor any role within any spiritual or religious organisation' but does not question the evidence that he is very religious. This is consistent with the increasing tendency of religious opponents of AD to disguise the doctrinal basis of their opposition[3] and deliberat...
Dr Regnard claims that I 'find comfort in the belief that any sceptic or critic of assisted dying must be driven by religious fanaticism' That is untrue. Last year, I sent him my critique of two prominent unbelieving opponents of AD, Douglas Murray and Kevin Yuill. [1] Far from being 'desperate to claim that assisted dying is safe' I have argued repeatedly (including emails to Dr Regnard) that occasional difficulties in swallowing or absorbing the full oral dose of prescribed AD medication is a strong argument for direct third-party administration, as preferred by over 99% of Canadian AD patients who have a choice.
Although Dr Doré cites a paper as proof that the quality of death in AD is not superior to that in patients requesting but not receiving AD,[2] it actually shows the opposite. "Family members of those choosing [AD] reported greater symptom control, particularly in regard to control over surroundings, better functioning, better energy, and better control of bowel and bladder." He claims that 'in no way is religion mentioned' and 'in no form do I have a paid role, nor any role within any spiritual or religious organisation' but does not question the evidence that he is very religious. This is consistent with the increasing tendency of religious opponents of AD to disguise the doctrinal basis of their opposition[3] and deliberately replace it with concern for the disabled (a majority of whom actually support AD) or claims that AD drugs are untested and can cause 'agonising' deaths. In reality, most of them, especially pentobarbitone, are anaesthetic drugs that are not used for anaesthesia because they are too long-acting. If the enormous doses used in AD are properly absorbed, profound and prolonged unconsciousness is inevitable. The patient who cannot be anaesthetised has yet to be born. Dignitas informed me that no patient who swallowed their usual 15g dose of pentobarbitone survived. Delayed absorption in a few cases means that permanent respiratory arrest, normally appearing within 20-30 minutes, can occasionally take several hours to occur but patients remain deeply unconscious until that point. For comparison, when barbiturates were often used in suicide attempts, patients who had taken more than 2-3g rarely reached hospital alive. After 15g of i/v pentobarbitone, respiratory arrest occurs within seconds and cardiac arrest usually follows within a minute.[4] Can medically qualified opponents of AD at least agree to end these pharmacologically absurd objections? The botched US executions cited in their support reflect the refusal of health-professionals with i/v skills to participate; old and rigid protocols that exclude the most appropriate drugs; or the inability to obtain them. Additionally, former i/v drug abusers on Death Row may have no easily-accessible veins, as I often found when trying to take blood from my addict patients.
REFERENCES
1. Slippery Slopes In: Brewer C, O, let me not get Alzheimer’s, sweet heaven! Why many people prefer death or active deliverance to living with dementia. Foreword by Henry Marsh. Skyscraper Books. 2019.
2. Smith KA et al. Quality of death and dying in patients who request physician-assisted death. Journal of Palliative Medicine, 2011; 14(4): 445-50.
4. Brewer C, Weber C. Intravenous pentobarbitone causes cardiac arrest more quickly than multi-drug infusions. Pharmacology and physiology of a quick, simple and predictable intravenous procedure for MAiD providers. Paper presented at World Federation of Right-to-Die Societies, Toronto, Nov 4th 2022
In responding to a rational discussion by Doré,(1) Brewer’s reply was not surprising.(2) He finds comfort in the belief that any sceptic or critic of assisted dying must be driven by religious fanaticism. That prejudice might excuse his mention of the Spanish Inquisition and quoting the bible; but it does not excuse personal criticism of a colleague’s rational arguments on the basis of unsubstantiated claims of religious intransigence.
As an agnostic, I may share Brewer’s scepticism of religion. Unlike Brewer, I am aware of many agnostics, atheists and humanists who have deep concerns around assisted dying, and many others with religious beliefs whose concerns are driven by strong secular arguments. Brewer is desperate to claim that assisted dying is safe despite the increasing evidence of abuse and lack of monitoring.(3) Fanaticism does not need religion to be damaging.
In responding to a rational discussion by Doré,(1) Brewer’s reply was not surprising.(2) He finds comfort in the belief that any sceptic or critic of assisted dying must be driven by religious fanaticism. That prejudice might excuse his mention of the Spanish Inquisition and quoting the bible; but it does not excuse personal criticism of a colleague’s rational arguments on the basis of unsubstantiated claims of religious intransigence.
As an agnostic, I may share Brewer’s scepticism of religion. Unlike Brewer, I am aware of many agnostics, atheists and humanists who have deep concerns around assisted dying, and many others with religious beliefs whose concerns are driven by strong secular arguments. Brewer is desperate to claim that assisted dying is safe despite the increasing evidence of abuse and lack of monitoring.(3) Fanaticism does not need religion to be damaging.
Thank you for reading the paper. I do not have a competing interest as Brewer accuses (1), in no form do I have a paid role, nor any role within any spiritual or religious organisation.
To state it clearly, in no way is religion mentioned, illuded to, nor is it a formulation of any of the arguments in this paper, my expertise is simply that of a palliative care physician.
I will explain a misconception he has outlined. My comparison to capital punishment is based upon the legal standard we have set in the UK, ‘that no-one incorrect should be killed’.
Given incorrect diagnosis, incorrect prognosis and especially autonomy being fluctuant, relational and social it is inevitable some will be killed incorrectly. The individual autonomy difference between capital punishment and assisted suicide doesn’t mute the point, rather it outlines even greater uncertainty resulting in incorrect deaths. Choosing assisted suicide based upon an incorrect diagnosis for example is not a valid choice. Choosing assisted suicide based upon social circumstances is simply facilitating suicide. Choosing assisted suicide based upon a unlikely future and fear of it, is not a rationally made choice. Brewer states he is a rationalist, indeed an ex-psychiatrist, is it thus not prudent to realise and explore the reason behind a choice rather than blindly accept the choice? Indeed, is this not the basis of suicide prevention?
Furthermore, suffering does not appear to diminish...
Thank you for reading the paper. I do not have a competing interest as Brewer accuses (1), in no form do I have a paid role, nor any role within any spiritual or religious organisation.
To state it clearly, in no way is religion mentioned, illuded to, nor is it a formulation of any of the arguments in this paper, my expertise is simply that of a palliative care physician.
I will explain a misconception he has outlined. My comparison to capital punishment is based upon the legal standard we have set in the UK, ‘that no-one incorrect should be killed’.
Given incorrect diagnosis, incorrect prognosis and especially autonomy being fluctuant, relational and social it is inevitable some will be killed incorrectly. The individual autonomy difference between capital punishment and assisted suicide doesn’t mute the point, rather it outlines even greater uncertainty resulting in incorrect deaths. Choosing assisted suicide based upon an incorrect diagnosis for example is not a valid choice. Choosing assisted suicide based upon social circumstances is simply facilitating suicide. Choosing assisted suicide based upon a unlikely future and fear of it, is not a rationally made choice. Brewer states he is a rationalist, indeed an ex-psychiatrist, is it thus not prudent to realise and explore the reason behind a choice rather than blindly accept the choice? Indeed, is this not the basis of suicide prevention?
Furthermore, suffering does not appear to diminish in jurisdictions with legalised assisted dying. In Kathryn Smith et al’s paper (2) their conclusion stated:
“The quality of death experienced by those who received lethal prescriptions is no worse than those not pursuing PAD (Physician-Assisted Death), and in some areas it is rated by family members as better.”
Thus, assisted dying does not reduce ‘suffering’, but by Brewer’s own admittance introduces incorrect deaths. That is the rational position and I would direct Brewer to an excellent publication, ‘Assisted suicide: The Liberal, Humanist Case against liberalization by Kevin Yuill’ (3)
1) Colin Brewer, Rapid Response, Assisted suicide and capital punishment: a mistaken analogy. 14 July 2023
2) Smith KA et al. Quality of death and dying in patients who request physician-assisted death. Journal of Palliative Medicine, 2011; 14(4): 445-50.
3) Herring, J. (2014). Assisted Suicide: The Liberal, Humanist Case Against Liberalization. By Kevin Yuill, Basingstoke: Palgrave Macmillan, 2013. 208 pp. ISBN 978-1-13728-629-1 £55.00. International Journal of Law in Context, 10(2), 273-276. doi:10.1017/S1744552314000093 https://www.cambridge.org/core/journals/international-journal-of-law-in-...
The ‘no competing interest’ declaration in Doré’s paper[1] opposing assisted dying/assisted suicide (ADS) is highly misleading. In September 2019, he was among 911 Christian signatories to an open letter opposing abortion services in Northern Ireland.[2] It includes: ‘As Christians we believe that the 6th Commandment is binding upon all of humanity. “You shall not murder” (Exodus 20:13)’, a belief evidently rejected by the Spanish Inquisition when condemning its last heretic in 1826. His objections to ADS may therefore be equally religion-based.
Most opposition to ADS has doctrinal origins but surveys repeatedly show that believers, including former Archbishop John Carey, are almost as supportive of ADS as the general UK population. Doré exemplifies recent trends among religious opponents to conceal the beliefs that typically inform their opposition, because they realise Bible-based arguments carry decreasing weight IN AN increasingly secular Britain. Very religious physicians are over-represented in UK palliative care,[3] forcing those who support ADS to do so anonymously lest they damage their careers.[4]
Comparing capital punishment, an involuntary and generally unwanted procedure, with desired, voluntary and usually long-considered ADS is a major category error. Capital punishment ended in European countries not primarily because of rare mistaken convictions but because its Biblical ‘eye for an eye’ principle was increasingly challenged. Hanging was...
The ‘no competing interest’ declaration in Doré’s paper[1] opposing assisted dying/assisted suicide (ADS) is highly misleading. In September 2019, he was among 911 Christian signatories to an open letter opposing abortion services in Northern Ireland.[2] It includes: ‘As Christians we believe that the 6th Commandment is binding upon all of humanity. “You shall not murder” (Exodus 20:13)’, a belief evidently rejected by the Spanish Inquisition when condemning its last heretic in 1826. His objections to ADS may therefore be equally religion-based.
Most opposition to ADS has doctrinal origins but surveys repeatedly show that believers, including former Archbishop John Carey, are almost as supportive of ADS as the general UK population. Doré exemplifies recent trends among religious opponents to conceal the beliefs that typically inform their opposition, because they realise Bible-based arguments carry decreasing weight IN AN increasingly secular Britain. Very religious physicians are over-represented in UK palliative care,[3] forcing those who support ADS to do so anonymously lest they damage their careers.[4]
Comparing capital punishment, an involuntary and generally unwanted procedure, with desired, voluntary and usually long-considered ADS is a major category error. Capital punishment ended in European countries not primarily because of rare mistaken convictions but because its Biblical ‘eye for an eye’ principle was increasingly challenged. Hanging was also regarded as primitive and inhumane. Ironically, most countries where capital punishment persists are noted for religiousness, like Iran and the USA.
Doré writes: ‘We have speed limits to balance our individual personal autonomy in driving the car, versus the societal and population safety’. Balance is the key word. Even when observed, 30mph speed limits don’t eliminate road deaths. Returning to the original red-flag-and-4mph laws probably would eliminate them but society allows avoidable automobile deaths because of other societal considerations. ‘As with all regulations, there is a balance to be struck between protecting patients (and professionals) against mistakes, misunderstandings or malice and making the procedures so burdensome and protracted that patients cannot access [ADS] at all or have to experience significant periods of severe suffering before obtaining it. There is remarkably little evidence that laws allowing patients to choose [ADS] are abused.’[5]
Doré’s paper resembles pharmacologically absurd claims that massive anaesthetic overdoses typically used for ADS expose patients to agonising deaths.[6] If there were any truth in that, it would simply argue for doctor-administered rather than self-administered medication, as chosen by over 99% of Canadian ADS patients.
Finally, if Doré opposes all abortion, he presumably opposes intrauterine contraceptive devices, whose fertility-controlling mechanisms include significant embryocidal ones.[7] Does he also, like The Vatican, oppose all artificial contraception and support denying Christian burial to assisted suicides?
REFERENCES.
1. Doré M. Assisted suicide and capital punishment: a mirror image? BMJ Support Palliat Care. 2023 Jun 27:spcare-2023-004380. doi: 10.1136/spcare-2023-004380. Epub ahead of print. PMID: 37369575.
3. Seale C. The role of doctors' religious faith and ethnicity in taking ethically controversial decisions during end-of-life care. J Med Ethics. 2010 Nov;36(11):677-82. doi: 10.1136/jme.2010.036194. Epub 2010 Aug 25. PMID: 20739708.
4. We risk our careers if we discuss assisted dying, say UK palliative care consultants BMJ 2019;365:l1494
5. Brewer C. Slippery slopes: are they always a bad thing? In:O, let me not get Alzheimer’s, sweet heaven! Why many people prefer death or active deliverance to living with dementia. Foreword by Henry Marsh. Skyscraper Books. 2019.
6. Worthington A, Finlay I, Regnard C. Efficacy and safety of drugs used for 'assisted dying'. Br Med Bull. 2022 May 4:ldac009. doi: 10.1093/bmb/ldac009. Epub ahead of print. PMID: 35512347.
7. Stanford JB, Mikolajczyk RT. Mechanisms of action of intrauterine devices: update and estimation of postfertilization effects Am J Obstet Gynecol, 2002 Dec;187(6):1699-708.
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.
In responding to a rational discussion by Doré,(1) Brewer’s reply was not surprising.(2) He finds comfort in the belief that any sceptic or critic of assisted dying must be driven by religious fanaticism. That prejudice might excuse his mention of the Spanish Inquisition and quoting the bible; but it does not excuse personal criticism of a colleague’s rational arguments on the basis of unsubstantiated claims of religious intransigence.
As an agnostic, I may share Brewer’s scepticism of religion. Unlike Brewer, I am aware of many agnostics, atheists and humanists who have deep concerns around assisted dying, and many others with religious beliefs whose concerns are driven by strong secular arguments. Brewer is desperate to claim that assisted dying is safe despite the increasing evidence of abuse and lack of monitoring.(3) Fanaticism does not need religion to be damaging.
1) Doré M. Assisted suicide and capital punishment: a mirror image? BMJ Supportive and Palliative Care. 2023 Jun 27: https://spcare.bmj.com/content/early/2023/06/26/spcare-2023-004380
Show More2) Brewer C. Assisted suicide and capital punishment: a mistaken analogy. BMJ Supportive and Palliative Care. 2023 Jul 14: https://spcare.bmj.com/content/early/2023/06/26/spcare-2023-004380.respo...
3) Coelho R, Maher J, Gain...
Thank you for reading the paper. I do not have a competing interest as Brewer accuses (1), in no form do I have a paid role, nor any role within any spiritual or religious organisation.
To state it clearly, in no way is religion mentioned, illuded to, nor is it a formulation of any of the arguments in this paper, my expertise is simply that of a palliative care physician.
I will explain a misconception he has outlined. My comparison to capital punishment is based upon the legal standard we have set in the UK, ‘that no-one incorrect should be killed’.
Given incorrect diagnosis, incorrect prognosis and especially autonomy being fluctuant, relational and social it is inevitable some will be killed incorrectly. The individual autonomy difference between capital punishment and assisted suicide doesn’t mute the point, rather it outlines even greater uncertainty resulting in incorrect deaths. Choosing assisted suicide based upon an incorrect diagnosis for example is not a valid choice. Choosing assisted suicide based upon social circumstances is simply facilitating suicide. Choosing assisted suicide based upon a unlikely future and fear of it, is not a rationally made choice. Brewer states he is a rationalist, indeed an ex-psychiatrist, is it thus not prudent to realise and explore the reason behind a choice rather than blindly accept the choice? Indeed, is this not the basis of suicide prevention?
Furthermore, suffering does not appear to diminish...
Show MoreThe ‘no competing interest’ declaration in Doré’s paper[1] opposing assisted dying/assisted suicide (ADS) is highly misleading. In September 2019, he was among 911 Christian signatories to an open letter opposing abortion services in Northern Ireland.[2] It includes: ‘As Christians we believe that the 6th Commandment is binding upon all of humanity. “You shall not murder” (Exodus 20:13)’, a belief evidently rejected by the Spanish Inquisition when condemning its last heretic in 1826. His objections to ADS may therefore be equally religion-based.
Most opposition to ADS has doctrinal origins but surveys repeatedly show that believers, including former Archbishop John Carey, are almost as supportive of ADS as the general UK population. Doré exemplifies recent trends among religious opponents to conceal the beliefs that typically inform their opposition, because they realise Bible-based arguments carry decreasing weight IN AN increasingly secular Britain. Very religious physicians are over-represented in UK palliative care,[3] forcing those who support ADS to do so anonymously lest they damage their careers.[4]
Comparing capital punishment, an involuntary and generally unwanted procedure, with desired, voluntary and usually long-considered ADS is a major category error. Capital punishment ended in European countries not primarily because of rare mistaken convictions but because its Biblical ‘eye for an eye’ principle was increasingly challenged. Hanging was...
Show MoreWith 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 MorePages