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?
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patient...
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patients undergoing IPC and pleurodesis.
In general IPC placement was well tolerated and patients liked that having an IPC meant that there was no need to return to hospital for further thoracocentesis. Care at home, with the support of District Nurses was greatly appreciated, but there were occasional frustrations. For some, placement of an IPC led to a gradual reduction of fluid drainage and pleurodesis leading to tube removal. . For some, subsequent tube removal did not change quality of life, for others it felt liberating.
For those undergoing chest drain and pleurodesis, there was some dissatisfaction that this necessitated a hospital stay and the chest drain bottle was inconvenient, but improvements in quality of life were worth the effort. We asked patients to reflect on the journey they had taken and whether they would have chosen the same pleural interventions again (multiple therapeutic thoracocenteses versus pleurodesis or IPC). Patients fell into two categories: those who thought that the decision should be made by the medical team and those who were keen for a particular option such as IPC or intermittent drainage.
Conclusions
While our findings with regards to removal of pleural fluid are similar to Twose et al’s, our data give some interesting insights into the experiences of patients who have undergone IPC or pleurodesis. Both procedures have burdens and benefits and it is important that patients are guided by clinicians so that they can make informed choices with regards to treatments.
Table 1: Perceptions of patients after IPC placement or talc pleurodesis
Perception of patient Exemplar quote(s)
IPC
Placement was generally well tolerated “I just felt pushing.” (Patient 1)
“It wasn’t very pleasant, but it was pain-free, it was just a lot of, sort of, faffing position-wise, and pushing, and shoving, and prodding…” (Patient 7)
No need to return to hospital “I wouldn’t want to stay in hospital unless I really had to.” (Patient 1)
Community support “…there was a hiccup the first weekend, the district nurses didn’t turn up.” (Patient 6)
IPC leading to pleurodesis Initially, it was every couple of days, but now, for the last few weeks, or even four weeks, it’s been weekly” (Patient 5)
Talc Pleurodesis
Inconvenience Interviewer: “And for the sake of coming into hospital and spending days in hospital was that transformation sort of worth it?”
Respondent: “Oh very definitely, yeah, yeah.” (Patient 4)“I don’t recall any particular pain from it, it was just the fact you wanted to go to the loo you’ve got to somehow drag this bucket around with you.” (Patient 4)
Decision making
Medical team lead on decision making “Medical people, they should know which you need most.” (Patient 2)
Patient taking lead on decision making “…you may have to have regular visits all the time, and that means, you know, constant interference. I mean, it’s not the most pleasant experience, and there’s a degree of pain in it…You need something a bit more permanent…” (Patient 5)
REFERENCES
1 Twose C, Ferris R, Wilson A, et al. Therapeutic thoracentesis symptoms and activity: a qualitative study. BMJ Supportive & Palliative Care 2021 doi:10.1136/ bmjspcare-2020-002584
ACKNOWLEDGEMENTS
We are grateful to the patients who participated in this study.
CONTRIBUTORS
PP conceived the study. RJ, HS and NP made substantial contribution to its design. RJ collected the data. All authors contributed to the analysis and interpretation of the data and critically revised drafts of the paper. They also read and approved the final version of the manuscript. PP is the guarantor.
FUNDING
Funding for this study was received from the Gloucestershire Hospitals Chest Fund and the Gloucestershire Hospitals NHS Foundation Trust Research and Innovation Forum Fund.
COMPETING INTERESTS
All authors have completed the Unified Competing Interests form at http://www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author). There are no competing interests.
APPROVALS/ETHICS
The study was approved by Gloucestershire Research Support Service, the Sue Ryder Research Governance Group, the National Research Ethics Service Committee West Midlands (REC Reference 16/WM/0222).
PROVENANCE AND PEER REVIEW
Not commissioned; externally peer reviewed.
DATA SHARING STATEMENT
Unpublished data are held by Sue Ryder Leckhampton Court Hospice.
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.
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
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.
It was with great interest that we read the recent paper entitled “Hospice care access inequalities: a systematic review and narrative synthesis”.(1) In this paper, the authors report inequality in access to hospice care for several population groups, including those living in rural or deprived areas, certain ethnic subgroups, the oldest of the old, and people with non-malignant diagnoses. They advocate for better collaboration and innovation in order to improve access to hospice care for all members of society. We noted that publications on hospice care for people under 18 years old were excluded from this review. We wish to add to the discussion by sharing some of the unique aspects and challenges of providing palliative care to babies, children and adolescents with palliative care needs.
Paediatric palliative care (PCC) is an active and total care approach to the care of children with life limiting and life threatening conditions from the point of diagnosis, throughout the child’s life and death.(2) Although it shares many similarities, it is distinct from adult palliative care due to the nature and trajectory of the conditions dealt with, as well as developmental, ethical and family issues. (3)
As a result of major advances in ICU care, the development of novel treatment and the increased availability of life sustaining treatment, such as dialysis, non-invasive ventilation and nutritional support, children with complex medical needs are living longer than...
It was with great interest that we read the recent paper entitled “Hospice care access inequalities: a systematic review and narrative synthesis”.(1) In this paper, the authors report inequality in access to hospice care for several population groups, including those living in rural or deprived areas, certain ethnic subgroups, the oldest of the old, and people with non-malignant diagnoses. They advocate for better collaboration and innovation in order to improve access to hospice care for all members of society. We noted that publications on hospice care for people under 18 years old were excluded from this review. We wish to add to the discussion by sharing some of the unique aspects and challenges of providing palliative care to babies, children and adolescents with palliative care needs.
Paediatric palliative care (PCC) is an active and total care approach to the care of children with life limiting and life threatening conditions from the point of diagnosis, throughout the child’s life and death.(2) Although it shares many similarities, it is distinct from adult palliative care due to the nature and trajectory of the conditions dealt with, as well as developmental, ethical and family issues. (3)
As a result of major advances in ICU care, the development of novel treatment and the increased availability of life sustaining treatment, such as dialysis, non-invasive ventilation and nutritional support, children with complex medical needs are living longer than ever before. This is particularly the case in the fields of neonatology, cardiology and genetics. Accordingly, the population in need of PPC is ever-growing. This diverse group ranges from extreme preterm infants, who may spend months living in intensive care units, to teenagers, who often require transition from PPC to adult palliative services.
Our review of the literature revealed that there is paucity of robust research regarding barriers to accessing paediatric palliative care. Tobin et al report that prognostic uncertainty is often a deterrent to making a referral for hospice care. (1) We believe this to be especially true in paediatrics. Due to the rare nature of many of the conditions, it is often unclear at birth what the quality and duration of a child’s life will be. Even when prognosis is understood, there is often a reluctance to refer to available services. Ideally, PPC should be delivered in parallel to active disease-focused care. In reality, many children are referred in the final days or hours of life, if at all. In our experience, the resistance to involving PCC can come from both families and from healthcare professionals. We believe this largely stems from a misconception of the role of PPC, and believe that education and awareness raising is essential to overcome this barrier to care. This has been reported in the literature, with one group finding that education, in addition to direct and positive interactions with PPC teams facilitated the acceptance and integration of PPC into patient care. (4)
Tobin et al also found that adults with non-malignant disease, specifically heart disease, cystic fibrosis and those with intellectual impairment were less likely to be referred to hospice services. We expect that this is likely similar in the paediatric population due to stronger ties traditionally between oncology services and PPC. In contrast to the adult population, we think it is unlikely that socio-economic group or ethnic background contribute to inequality in access to care in our context. Having said this, in Ireland, there is a geographical inequality. Due to the lack of a national service there is inequity of access, with more direct access to specialised PPC for children receiving care in the tertiary paediatric centres, both of which are based in Dublin. The need to enhance and expand the existing services in Ireland has been recognised (5). While awaiting commitment of funding, it is essential to collaborate with and support all healthcare workers who are providing PPC to children in a variety of settings across the country.
Infants and children have unique challenges and needs when it comes to paediatric palliative care. As with the adult population, education, innovation and collaboration are essential in improving access to PCC, as well as investment of funding and expansion of existing services. Building on the work by Tobin et al, we advocate for further research to be completed to better understand what factors may be limiting access to hospice care for the paediatric population, so that care can be provided equally to all people, of all ages.
References:
1. Tobin J, Rogers A, Winterburn I, et al Hospice care access inequalities: a systematic review and narrative synthesis BMJ Support Palliat Care Published Online First: 19 February 2021 doi: 10.1136/bmjspcare-2020-002719
2. A Guide to Children’s Palliative Care (Forth Edition) 2018 Together for Short Lives. Accessed April 21 at: https://www.togetherforshortlives.org.uk/wp-content/uploads/2018/03/TfSL...
3. Hain R, Heckford E, McCulloch R. Paediatric palliative medicine in the UK: past, present, future
Arch Dis Child 2012;97:381-384.
4. Verberne, L. M., Kars, M. C., Schepers, S. A. et al. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC palliat care, 2018 17(1), 23.
5. A national model of care for paediatric health services in Ireland (Chp 39) Health Servcie Executive. Accessed April 21 at: https://www.hse.ie/eng/services/publications/clinical-strategy-and-progr...
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?
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patient...
Show 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 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 MoreCohen and Chambaere imply that palliative care (PC) and ‘assisted dying’ (AD) will develop a loving relationship, albeit with compulsory marriage guidance.(1)
Claiming existing ‘integrated and synergistic’ links contradicts the fact that growth in PC services has stalled in Belgium and the Netherlands since 2012.(2) This assumes expert PC teams are accessible. In the UK, an estimated 118,000 people in 2017 could not access expert PC,(3) and only 15% of Canadians have access to publicly funded PC.(4) Even when PC is involved, the median duration of specialist PC involvement is 19 days,(5) barely enough time to resolve physical symptoms, let alone a wish to die.(6) Claiming PC or hospice involvement in AD patients is meaningless without knowing the expertise and length of involvement.
Suggesting that because some PC teams are involved in AD the rest must follow, ignores the depth of disquiet. Even 15 years after Oregon’s AD legislation, two thirds of hospices were refusing to participate.(7) The authors point to a paper which surveyed staff from two Canadian hospices.(8) This exposed profound concerns amongst staff about participation in AD but ignored the insidious impact of government mandates forcing hospice involvement, while glossing over reports of clinical complications and concerns about patients’ capacity and the steadfastness of their decision. There is no mention that Canadian AD legislation has removed many safeguards such as the 10-day reflectio...
Show 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...
It was with great interest that we read the recent paper entitled “Hospice care access inequalities: a systematic review and narrative synthesis”.(1) In this paper, the authors report inequality in access to hospice care for several population groups, including those living in rural or deprived areas, certain ethnic subgroups, the oldest of the old, and people with non-malignant diagnoses. They advocate for better collaboration and innovation in order to improve access to hospice care for all members of society. We noted that publications on hospice care for people under 18 years old were excluded from this review. We wish to add to the discussion by sharing some of the unique aspects and challenges of providing palliative care to babies, children and adolescents with palliative care needs.
Show MorePaediatric palliative care (PCC) is an active and total care approach to the care of children with life limiting and life threatening conditions from the point of diagnosis, throughout the child’s life and death.(2) Although it shares many similarities, it is distinct from adult palliative care due to the nature and trajectory of the conditions dealt with, as well as developmental, ethical and family issues. (3)
As a result of major advances in ICU care, the development of novel treatment and the increased availability of life sustaining treatment, such as dialysis, non-invasive ventilation and nutritional support, children with complex medical needs are living longer than...
Pages