We thank Gideonse & Coombes Lee for reading our paper. Their criticism of our analysis is at variance with official reports from the Oregon Health Authority.(1)
There may be many reasons why there has been a socio-economic change in those accessing an assisted death, but the percentage of those stating financial concerns in their assisted death continues to rise and was 8.2% in 2023, not 5.1% as they claim. The fact that nearly 1 in 10 have this concern requires further examination.
Oregon produces no details behind prolonged assisted deaths, except that half took between 54 minutes and 137 hours. They also provide no details on how soon after ingestion nine patients re-awakened. Notably, these unwanted events are not included as complications. Washington reported in 2021 that 16% took more than 2 hours to die.(2) It is often claimed that assisted deaths are quick, so the complication of prolonged deaths deserves closer examination.
It is remarkable to claim that Oregon destroys its confidential patient records in order to protect confidentiality. No health or business organisation is allowed to do this with confidential records since it is counter to good practice. Transparency requires many to keep their records for at least 10 years and this contrasts with the approximately 18 months in Oregon. The key point we made is that this destruction of essential data makes it impossible to carry out retrospective analysis of Oregon’s assisted deaths....
We thank Gideonse & Coombes Lee for reading our paper. Their criticism of our analysis is at variance with official reports from the Oregon Health Authority.(1)
There may be many reasons why there has been a socio-economic change in those accessing an assisted death, but the percentage of those stating financial concerns in their assisted death continues to rise and was 8.2% in 2023, not 5.1% as they claim. The fact that nearly 1 in 10 have this concern requires further examination.
Oregon produces no details behind prolonged assisted deaths, except that half took between 54 minutes and 137 hours. They also provide no details on how soon after ingestion nine patients re-awakened. Notably, these unwanted events are not included as complications. Washington reported in 2021 that 16% took more than 2 hours to die.(2) It is often claimed that assisted deaths are quick, so the complication of prolonged deaths deserves closer examination.
It is remarkable to claim that Oregon destroys its confidential patient records in order to protect confidentiality. No health or business organisation is allowed to do this with confidential records since it is counter to good practice. Transparency requires many to keep their records for at least 10 years and this contrasts with the approximately 18 months in Oregon. The key point we made is that this destruction of essential data makes it impossible to carry out retrospective analysis of Oregon’s assisted deaths.
The claim that consulting physicians can screen for depression ignores decades of evidence that doctors are poor at doing so.(3) There is no record in Oregon of how the screening was done. The fact that depression is common in serious illness and that only 1% of Oregon patients had psychiatric referrals suggests that depression is often missed by its assessing physicians.
The attempt to blame the two-thirds reduction in the length of patient-physician relationships on changing referral patterns is based on no data and is an attempt to cover up the reality that campaigners facilitate referral to a willing provider, with one prescriber writing 76 prescriptions last year. The "numerous oversight boards and enforcement agencies" claimed are remarkable for their invisibility in reporting. None monitor the doctor’s decision or the process leading up to the decision.
The claim that Oregon is top for palliative care in the US is not supported by the report they quote which only covers hospital specialist teams and says nothing about the 24 hour availability of multidisciplinary specialist palliative care in the community.
Gideonse & Coombes conveniently ignore many other issues such as the high complication rate in Oregon’s assisted deaths and the fact that 4 different drug combinations have been tried in the last 8 years without any research patient safeguards.
We stand by our analysis which shows important changes in Oregon’s assisted deaths that need to be explained. Gideonse & Coombes Lee have not done so.Claud Regnard, on behalf of the authors
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.
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-...
We have read with interest your letter about the changing face of day hospices since the onset of the COVID-19 pandemic. We would like to share our experience of support provided by our Wellbeing Centre team during this time which has evolved and developed into what is currently an entirely virtual service. This has been a challenging but also an extremely positive experience with an enthusiastic response from our patients wanting to engage in our extensive virtual offer of hospice wellbeing services.
In March 2020, we began by offering 3 virtual sessions per week. This has grown exponentially over the year and we are now offering up to 4 sessions per day with a total of 18 sessions per week supporting, on average, 23 patients per day. We have provided multiple types of support including yoga and other exercise classes, guided relaxation, art, Q&A sessions with our doctors, discussion support groups, carers’ groups, management of breathlessness and pain, and anxiety and fatigue management.
Age range of attendees of the virtual sessions have been between 40 to 90 years old, and from early to late in their disease trajectory. Between April 2020 and April 2021, we had 4,603 attendances with 413 referrals to the service.
We have conducted service evaluations to evaluate this new way of providing support to our patients and the feedback indicates that patients are keen for support to continue to be provided virtually.
We have read with interest your letter about the changing face of day hospices since the onset of the COVID-19 pandemic. We would like to share our experience of support provided by our Wellbeing Centre team during this time which has evolved and developed into what is currently an entirely virtual service. This has been a challenging but also an extremely positive experience with an enthusiastic response from our patients wanting to engage in our extensive virtual offer of hospice wellbeing services.
In March 2020, we began by offering 3 virtual sessions per week. This has grown exponentially over the year and we are now offering up to 4 sessions per day with a total of 18 sessions per week supporting, on average, 23 patients per day. We have provided multiple types of support including yoga and other exercise classes, guided relaxation, art, Q&A sessions with our doctors, discussion support groups, carers’ groups, management of breathlessness and pain, and anxiety and fatigue management.
Age range of attendees of the virtual sessions have been between 40 to 90 years old, and from early to late in their disease trajectory. Between April 2020 and April 2021, we had 4,603 attendances with 413 referrals to the service.
We have conducted service evaluations to evaluate this new way of providing support to our patients and the feedback indicates that patients are keen for support to continue to be provided virtually.
“Keep at it even after lockdown finishes, it is too good not to use on the right occasions”
“Very useful and enjoyable Don’t want to lose this opportunity for support”
However, there is also excitement at the prospect of being able to return to the hospice in person.
“This is wonderful technology but cannot wait for the hospice to be opened for our Wellbeing classes and to come in person!”
We conducted a service evaluation of our virtual video interactions with patients after the first wave of COVID-19. 92% of Wellbeing attendees stated that they be happy to communicate with healthcare staff at our hospice via a video link in the future. In a separate service evaluation, it was noted that the most common reasons for patients wanting to attend the virtual Wellbeing sessions were for emotional benefits (63%), contact with others (58%), contact with the hospice (56%) and to receive support for their medical condition (44%).
Although this way of providing support to patients with life-limiting illness may not be the preferred method, we have been surprised by the enthusiasm of the patients and their keen uptake of the sessions. Alongside a return to face-to-face sessions when possible, we plan to continue to offer virtual Wellbeing sessions going forward given the great success of the programme and also the extending the reach of our service to support both patients and carers who may not be able to attend the hospice in person. Maintaining support and a link with the hospice during the pandemic and providing a form of social interaction for our patients who have been shielding at home during the pandemic has been really appreciated and valued.
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’.
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.
This article provides a simplistic perspective, relying heavily on correlation, not causation, to make unproven claims about Oregon’s medical aid-in-dying law and erroneously comparing it to euthanasia laws outside the United States.
Claim: “...there was an increase in patients feeling a burden and describing financial concerns as reasons for choosing an assisted death.” (p. 1) “Detailed studies are needed to explain the marked change in medical funding for PAS patients in Oregon.” (p. 5)
Facts: While the Oregon Health Authority (OHA) reports insurance status, it doesn’t report whether patients used their insurance for medical aid in dying. Only 5.1% of people in Oregon who qualified for medical aid in dying since 1998 noted the financial burden among their reasons for requesting it.
Claim: "The 2022 report states that the combinations [of medications] have resulted in longer times from ingestion to death…" (p. 3)
Facts: The median time has risen, but it is still typically less than an hour from ingestion to death. Very few patients experience a significant delay between ingestion and death. Otherwise, there would be a higher median time.
Claim: “Unfortunately the destruction of OHA records after 1 year makes retrospective analysis impossible.” (p. 4).
Facts: OHA’s public explanation: “The State KC does collect the names of patients in order to cross-check death certificates. However, the law guarantees the confidential...
This article provides a simplistic perspective, relying heavily on correlation, not causation, to make unproven claims about Oregon’s medical aid-in-dying law and erroneously comparing it to euthanasia laws outside the United States.
Claim: “...there was an increase in patients feeling a burden and describing financial concerns as reasons for choosing an assisted death.” (p. 1) “Detailed studies are needed to explain the marked change in medical funding for PAS patients in Oregon.” (p. 5)
Facts: While the Oregon Health Authority (OHA) reports insurance status, it doesn’t report whether patients used their insurance for medical aid in dying. Only 5.1% of people in Oregon who qualified for medical aid in dying since 1998 noted the financial burden among their reasons for requesting it.
Claim: "The 2022 report states that the combinations [of medications] have resulted in longer times from ingestion to death…" (p. 3)
Facts: The median time has risen, but it is still typically less than an hour from ingestion to death. Very few patients experience a significant delay between ingestion and death. Otherwise, there would be a higher median time.
Claim: “Unfortunately the destruction of OHA records after 1 year makes retrospective analysis impossible.” (p. 4).
Facts: OHA’s public explanation: “The State KC does collect the names of patients in order to cross-check death certificates. However, the law guarantees the confidentiality of all participating patients (as well as physicians) and the Oregon Health Authority does not release this information to the public or media. The identity of participating physicians is coded, but the identity of individual patients is not recorded in any manner.”
Claim: “This steady reduction in the physician–patient relationship in Oregon may have made it more difficult to identify treatable factors influencing the wish to die, but there is a lack of recent data on how many Oregon PAS patients have a treatable depression." (p. 5)
Facts: Both the attending and consulting physicians are required to screen patients requesting medical aid in dying for depression causing impaired judgment and document their findings in writing. Doctors’ training makes them fully capable of finding depression when they look for it and the Oregon law requires them to do so. If either physician has any doubts, they must refer the patient for a psychiatric evaluation.
Regarding the time reduction in patient-provider relationships, anecdotal evidence shows that sometimes the patient’s doctor says they will “support” them when they become eligible under the law, but discover later that supporting them means keeping them comfortable in hospice care or referring them to another doctor without sufficient time to navigate the process.
Claim: ”...there is a lack of data on why they [patients] refused treatment and how they were advised and counseled. For example, in 2021 anorexia nervosa was one of the diagnoses listed … Anorexia nervosa in any young adult with capacity is terminal if it persists, but it can be challenging to determine the point at which treatment cannot succeed.” (p. 5).
Facts: Numerous oversight boards and enforcement agencies govern the practice of medical aid in dying, not just OHA: the medical board is responsible for investigating allegations about unethical practice of medicine; the police are responsible for investigating crimes; the health department is responsible for monitoring and collecting the data. The authors fail to cite any criminal convictions, or even prosecutions, for abuse.
Claim: The lack of information…makes it difficult to evaluate whether adequate palliative care was received before PAS in Oregon." (p. 6)
Facts: Oregon is a top-rated U.S. state for equitable access to palliative care, according to the latest Report Card by the Center to Advance Palliative Care.
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?
We thank Gideonse & Coombes Lee for reading our paper. Their criticism of our analysis is at variance with official reports from the Oregon Health Authority.(1)
There may be many reasons why there has been a socio-economic change in those accessing an assisted death, but the percentage of those stating financial concerns in their assisted death continues to rise and was 8.2% in 2023, not 5.1% as they claim. The fact that nearly 1 in 10 have this concern requires further examination.
Oregon produces no details behind prolonged assisted deaths, except that half took between 54 minutes and 137 hours. They also provide no details on how soon after ingestion nine patients re-awakened. Notably, these unwanted events are not included as complications. Washington reported in 2021 that 16% took more than 2 hours to die.(2) It is often claimed that assisted deaths are quick, so the complication of prolonged deaths deserves closer examination.
It is remarkable to claim that Oregon destroys its confidential patient records in order to protect confidentiality. No health or business organisation is allowed to do this with confidential records since it is counter to good practice. Transparency requires many to keep their records for at least 10 years and this contrasts with the approximately 18 months in Oregon. The key point we made is that this destruction of essential data makes it impossible to carry out retrospective analysis of Oregon’s assisted deaths....
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 MoreIn 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 MoreWe have read with interest your letter about the changing face of day hospices since the onset of the COVID-19 pandemic. We would like to share our experience of support provided by our Wellbeing Centre team during this time which has evolved and developed into what is currently an entirely virtual service. This has been a challenging but also an extremely positive experience with an enthusiastic response from our patients wanting to engage in our extensive virtual offer of hospice wellbeing services.
In March 2020, we began by offering 3 virtual sessions per week. This has grown exponentially over the year and we are now offering up to 4 sessions per day with a total of 18 sessions per week supporting, on average, 23 patients per day. We have provided multiple types of support including yoga and other exercise classes, guided relaxation, art, Q&A sessions with our doctors, discussion support groups, carers’ groups, management of breathlessness and pain, and anxiety and fatigue management.
Age range of attendees of the virtual sessions have been between 40 to 90 years old, and from early to late in their disease trajectory. Between April 2020 and April 2021, we had 4,603 attendances with 413 referrals to the service.
We have conducted service evaluations to evaluate this new way of providing support to our patients and the feedback indicates that patients are keen for support to continue to be provided virtually.
“Keep at it even after loc...
Show MoreI approve of the direction-of-travel of the approach in Wales, which it seems to me is more reflective and encompassing of the complexity of end-of-life than is the now widely-adopted ‘ReSPECT’ in England. The term Future Care Planning as used in Wales, explicitly includes planning made when a patient lacks capacity – for example, if the planning takes place when a patient is ‘comatose’ or ‘deeply unconscious’. Whereas the ReSPECT process, generates a main ReSPECT form (ref 1) which tells readers in its section 1 ‘The ReSPECT process starts with conversations between a person and a healthcare professional’. So, presumably any planning ahead which is only embarked on after a patient has already become unable to engage in conversation, should not be captured by either the ReSPECT process or by the ReSPECT form.
I believe that many NHS Trusts in England, in adopting ReSPECT have moved too far in the direction of trying to create a form which seeks to be ‘all things to all readers’ - whereas in Wales, as we can read in the paper by Taubert and Bounds ‘The approach seeks to cater for the disparate need of the Welsh population; there is not merely one format for multiple scenarios, but a choice of approaches, communication strategies and documents to suit bespoke needs.’.
I have only two issues with the paper. One is this sentence, which is in fact from the European Association for Palliative Care definition of ACP: ‘It encourages individuals to identify a person...
Show 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...
This article provides a simplistic perspective, relying heavily on correlation, not causation, to make unproven claims about Oregon’s medical aid-in-dying law and erroneously comparing it to euthanasia laws outside the United States.
Claim: “...there was an increase in patients feeling a burden and describing financial concerns as reasons for choosing an assisted death.” (p. 1) “Detailed studies are needed to explain the marked change in medical funding for PAS patients in Oregon.” (p. 5)
Facts: While the Oregon Health Authority (OHA) reports insurance status, it doesn’t report whether patients used their insurance for medical aid in dying. Only 5.1% of people in Oregon who qualified for medical aid in dying since 1998 noted the financial burden among their reasons for requesting it.
Claim: "The 2022 report states that the combinations [of medications] have resulted in longer times from ingestion to death…" (p. 3)
Facts: The median time has risen, but it is still typically less than an hour from ingestion to death. Very few patients experience a significant delay between ingestion and death. Otherwise, there would be a higher median time.
Claim: “Unfortunately the destruction of OHA records after 1 year makes retrospective analysis impossible.” (p. 4).
Facts: OHA’s public explanation: “The State KC does collect the names of patients in order to cross-check death certificates. However, the law guarantees the confidential...
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?
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