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I recently reported on an important clarification of Swedish policy regarding patients who want to terminate life-supporting treatment and also receive effective palliation, i.e. an unequivocal affirmation of such a right. Today, Dagens Nyheter, my country's leading newspaper, reports that the woman who had appealed to the National Board of Health and Welfare for this clarification had her respiratory treatment terminated after having been sedated and, as an effect, passed away on Wednesday – all on her own request. Before that, she sent a text-message to Dagens Nyheter expressing her satisfaction with the decision of the NBHW.
The comments so far have been humble and restrained, and the the Ethics Delegation of the Swedish Society of Medicine took the opportunity to sensibly distance itself from the unfruitful lingo of "active" and "passive" euthanasia, stating that terminating a treatment has nothing to do with killing people in the legal sense.
However, Dagens Nyheter itself gets it wrong in its comment when saying that this is a radical policy shift. It is not. As described in my earlier blog on this, respecting patient's wishes not to undergo life-supporting treatment in combination with affirming their right to effective palliation has been accepted practice for about a decade until a recent legal case (as yet to be decided on). The comment also gets it wrong when making analogies to a case some years back, when a paralysed man requested physician-assisted suicide, was declined this and then ended his own life at the well-known suicide clinic in Switzerland. The crucial difference is that this man was not undergoing any sort of life-supporting treatment, and the clarified policy is thus not applicable to that case. Until anything else is decided, the received custom of viewing the assistance to suicide as incompatible with acceptable medical practice will prevail.
Thursday, 6 May 2010
Tuesday, 4 May 2010
Reflections from a just inbroken RAE'er
As responsible for the management of my department's research organisation and activities, yesterday afternoon I submitted the last in a string of reports in my, my department's and - indeed - my university's first Research Assessment Exercise - better known in Commonwealth academia as the RAE (customary, it appears, pronounced with progressing volume, an emphasis on the "E" and a salient tone of despair). Having thus been aware of this sort of thing as an abstract concept through my many UK academic friends' desperate huffings and puffings and hissings and cursings over the years, it was with some awe that I set out to take on the task laid on us all by our Vice Chancellor. Technically, it all started just before christmas last year and technically it's not over until February or something next year, with some external panel's making site-visits during fall, but the heavy load has been loaded. So, I thought it worth some while to share my reflections on this phenomenon and this journey with its many side-turns. Don't take some of the more sarcastic passages personally. Take it as a piece of self-therapy, a tongue-in-cheek provocation, or even as a sublime proposal.
RED-10, as my university's RAE has been dubbed (and it has indeed made many eyes - albeit slightly more than just ten - both red and sore staring at countless excel files with microscopic entries and fields) is not, it should be made clear to those familiar with the UK system, a part of a funding scheme. It has nothing to do with the regular system for allocating research funds to or within universities (rather, Sweden is just now launching a purely quantitative performance-driven scheme to that effect). Instead, RED-10 was initiated apparently as an effect of the university senior management's disappointment at the outcome of a number of huge project-funding races during the last 10 years. The cause is thus rather clear. However, the intention has not been clearly stated, although I would be very surprised if the result of our RAE was not used by the Vice Chancellor to make some changes in the system for the allocation of research funds, special supports, etcetera - quite probably changes that have been on the list for some time but where objective arguments and, perhaps, guts have been missing.
The initial tasks to undertake were quite straightforward: secure the quality of publication reporting in the publication database, and reporting other accomplishments by individual researchers (such as keynote speeches, visiting fellowships, prizes, review activity, and so on). I had contact with my counterparts at many other departments, as well as the RED-10 office and the people running the publication database continuously during this time, and I was really surprised at how common it seemed to be that very privileged senior researchers and chaired or full professors more or less went on strike. And these where simple tasks with plenty of time given before deadline - just go to the database, check your stuff and click a button, then take out your CV and calendar and fill in the blanks in the "other accomplishment form". Took me about 2 hours in total, and I had quite a handful to report. Instead, these people either closed down communications or spent their time authoring long emails (at first pompous and gradually more and more sobbing in tone) about how horrible they were treated to have to do such a thing - time that, it takes no professor to calculate, could have been spent on having this little thing over and done with, and still have a slot over for pestering their colleagues with a sob-mail or two.
Now, some of these, as a rule very well paid, very high status people, with a freedom allocated within their job that others would just dream about, seemed to want to make some sort of ideological stand out of their attitude: it was preposterous that such a meaningless thing should force them to lay to a side for a moment their "regular tasks" (this being what they themselves preferred to do). Besides communicating the very interesting attitude of someone employed to do a job that they want to have the world but are not willing to give as much as a crumb, this reason is still so bad that it makes one wonder what all those years spent on advanced education really accomplished. I've already mentioned the obvious irrationality of the pomp-/sob-mail syndrome, but it doesn't end with that. One elementary thing you learn as an academic and a researcher is to make clear distinctions and apply these consistently in your work. Now, it is most certainly open for debate whether the RAE is worthwhile. But given the fact that your university has decided to do one, your department is in the position that if it does not do its part well, it and its staff will suffer as a result. This is no different from some law you might not agree with, or some increased tax you might have preferred not to pay. The elementary distinction I had presumed all higher educated people to have learned relating to this is that between fighting the policy and making yourself and other people into a pointless victim of the policy. These high and full of themselves professors may, of course, criticise the RAE, and they may fight its initiation as well as its application to further policy making. However, just going on strike accomplishes nothing more than the very opposite of what they strive for: less room for research, less academic freedom. In addition, it undercuts the opportunities of their less senior colleagues by making their research environment come out in a less favorable light than necessary. It makes you wonder, doesn't it, if it all boils down to the "I don't want to, I don't want to, I don't want to!" of the spoilt, hysterical child, or is it perhaps fear?
The heaviest part of the RAE was doubtlessly the self-evaluations that departments were tasked to submit. The whole exercise was constructed so that here one couldn't do what academic units usually do when evaluating themselves; writing a few pages about how great they are and how fantastic everything is going, it's just that we're short of funds! This is no different from all universities containing all these potential Nobel prize winners as soon as it is time to request funds on that level. However, since the external panels will have all the hard data on external funding, publication, other accomplishments, staff lists, etcetera, balloons of that sort would be pricked to exploded instantly. This made the work difficult, since most academic units house quite a number of people who are not star researchers - but usually very important for a number of other reasons - at the same time as the academic culture makes everyone feel worthless unless they are counted as star researchers. Pondering the obvious fact that even most universities don't house many bona fide star researchers (if any), this collective mentality of academia is obviously irrational. However, it is in place and for someone in my position, the RAE made it necessary to confront the hurdles it presents. To my surprise, despite some glitches having mainly to do with me and the rest of the management underestimating the task, the process turned out to be very educating for everyone involved and, I stretch myself to claim, actually to great benefit for our research. This was of special value in my department, which is the result of a recent merger and, thus, hosting several disciplines without much of a shared history. The RAE actually helped us to form a clear idea about ourselves as a unit, our strong parts and connections, and where new connections can be made to make less strong parts stronger. It remains to be seen if the external panels will agree with our analysis, of course, but even if they don't, to walk this mile actually took us somewhere. And this is not just me talking, several of our professors and other seniors took active part in this work a drew similar conclusions.
This said, I must at the same time declare my sincere sympathy with my UK colleagues, who are forced to do this sort of thing not just now and then, but as a regular, necessary part of the funding scheme. It does makes sense in large organisations like universities to stir the pot every now and then, especially research focused universities, which due to the nature of this practice cannot be as tightly controlled as, for instance, schools. However, having the soup slopping about continuously appears to me to be of doubtful value, except perhaps for the countless bureaucrats that can collect a paycheck for keeping the pot boggling by its handles. I'm aware that part of the rationale for the UK system is to have not only performance-driven resource allocation, but a fair such system. But I doubt that this is accomplished, unless it is to the expense of the very point of having a performance-driven system in the first place, especially if you count in all those paychecks for running the system that could instead have funded research....
So, RAE - fine! Regular RAE, I'm skeptic, unless the intervals are made long enough for the sort of general need of organisations to be disturbed kicks in.
RED-10, as my university's RAE has been dubbed (and it has indeed made many eyes - albeit slightly more than just ten - both red and sore staring at countless excel files with microscopic entries and fields) is not, it should be made clear to those familiar with the UK system, a part of a funding scheme. It has nothing to do with the regular system for allocating research funds to or within universities (rather, Sweden is just now launching a purely quantitative performance-driven scheme to that effect). Instead, RED-10 was initiated apparently as an effect of the university senior management's disappointment at the outcome of a number of huge project-funding races during the last 10 years. The cause is thus rather clear. However, the intention has not been clearly stated, although I would be very surprised if the result of our RAE was not used by the Vice Chancellor to make some changes in the system for the allocation of research funds, special supports, etcetera - quite probably changes that have been on the list for some time but where objective arguments and, perhaps, guts have been missing.
The initial tasks to undertake were quite straightforward: secure the quality of publication reporting in the publication database, and reporting other accomplishments by individual researchers (such as keynote speeches, visiting fellowships, prizes, review activity, and so on). I had contact with my counterparts at many other departments, as well as the RED-10 office and the people running the publication database continuously during this time, and I was really surprised at how common it seemed to be that very privileged senior researchers and chaired or full professors more or less went on strike. And these where simple tasks with plenty of time given before deadline - just go to the database, check your stuff and click a button, then take out your CV and calendar and fill in the blanks in the "other accomplishment form". Took me about 2 hours in total, and I had quite a handful to report. Instead, these people either closed down communications or spent their time authoring long emails (at first pompous and gradually more and more sobbing in tone) about how horrible they were treated to have to do such a thing - time that, it takes no professor to calculate, could have been spent on having this little thing over and done with, and still have a slot over for pestering their colleagues with a sob-mail or two.
Now, some of these, as a rule very well paid, very high status people, with a freedom allocated within their job that others would just dream about, seemed to want to make some sort of ideological stand out of their attitude: it was preposterous that such a meaningless thing should force them to lay to a side for a moment their "regular tasks" (this being what they themselves preferred to do). Besides communicating the very interesting attitude of someone employed to do a job that they want to have the world but are not willing to give as much as a crumb, this reason is still so bad that it makes one wonder what all those years spent on advanced education really accomplished. I've already mentioned the obvious irrationality of the pomp-/sob-mail syndrome, but it doesn't end with that. One elementary thing you learn as an academic and a researcher is to make clear distinctions and apply these consistently in your work. Now, it is most certainly open for debate whether the RAE is worthwhile. But given the fact that your university has decided to do one, your department is in the position that if it does not do its part well, it and its staff will suffer as a result. This is no different from some law you might not agree with, or some increased tax you might have preferred not to pay. The elementary distinction I had presumed all higher educated people to have learned relating to this is that between fighting the policy and making yourself and other people into a pointless victim of the policy. These high and full of themselves professors may, of course, criticise the RAE, and they may fight its initiation as well as its application to further policy making. However, just going on strike accomplishes nothing more than the very opposite of what they strive for: less room for research, less academic freedom. In addition, it undercuts the opportunities of their less senior colleagues by making their research environment come out in a less favorable light than necessary. It makes you wonder, doesn't it, if it all boils down to the "I don't want to, I don't want to, I don't want to!" of the spoilt, hysterical child, or is it perhaps fear?
The heaviest part of the RAE was doubtlessly the self-evaluations that departments were tasked to submit. The whole exercise was constructed so that here one couldn't do what academic units usually do when evaluating themselves; writing a few pages about how great they are and how fantastic everything is going, it's just that we're short of funds! This is no different from all universities containing all these potential Nobel prize winners as soon as it is time to request funds on that level. However, since the external panels will have all the hard data on external funding, publication, other accomplishments, staff lists, etcetera, balloons of that sort would be pricked to exploded instantly. This made the work difficult, since most academic units house quite a number of people who are not star researchers - but usually very important for a number of other reasons - at the same time as the academic culture makes everyone feel worthless unless they are counted as star researchers. Pondering the obvious fact that even most universities don't house many bona fide star researchers (if any), this collective mentality of academia is obviously irrational. However, it is in place and for someone in my position, the RAE made it necessary to confront the hurdles it presents. To my surprise, despite some glitches having mainly to do with me and the rest of the management underestimating the task, the process turned out to be very educating for everyone involved and, I stretch myself to claim, actually to great benefit for our research. This was of special value in my department, which is the result of a recent merger and, thus, hosting several disciplines without much of a shared history. The RAE actually helped us to form a clear idea about ourselves as a unit, our strong parts and connections, and where new connections can be made to make less strong parts stronger. It remains to be seen if the external panels will agree with our analysis, of course, but even if they don't, to walk this mile actually took us somewhere. And this is not just me talking, several of our professors and other seniors took active part in this work a drew similar conclusions.
This said, I must at the same time declare my sincere sympathy with my UK colleagues, who are forced to do this sort of thing not just now and then, but as a regular, necessary part of the funding scheme. It does makes sense in large organisations like universities to stir the pot every now and then, especially research focused universities, which due to the nature of this practice cannot be as tightly controlled as, for instance, schools. However, having the soup slopping about continuously appears to me to be of doubtful value, except perhaps for the countless bureaucrats that can collect a paycheck for keeping the pot boggling by its handles. I'm aware that part of the rationale for the UK system is to have not only performance-driven resource allocation, but a fair such system. But I doubt that this is accomplished, unless it is to the expense of the very point of having a performance-driven system in the first place, especially if you count in all those paychecks for running the system that could instead have funded research....
So, RAE - fine! Regular RAE, I'm skeptic, unless the intervals are made long enough for the sort of general need of organisations to be disturbed kicks in.
Monday, 26 April 2010
Legal Right to Die Comfortably for the Lethally Ill or Injured finally Confirmed in Sweden – but the Line Between Palliation and Murder is Still Undefined...
Today the Swedish National Board of Health and Welfare (NBHW), my country's highest authority on the application of health care law and associated ethical codes, delivered its ruling on a publicised case where a 31 year old woman, totally physically incapacitated since 6 years of age, appealed for the right to have the respirator keeping her alive since 25 years turned off and then to receive palliative care powerful enough to effectively ameliorate the resulting pain and anxiety.
To grant such wishes has indeed been established practice within Swedish health care since at least a decade back, not least in the case of old people who decline nutrition and liquid. The received opinion among doctors, officials and ethicist alike has been that the acceptability of this practice is a logical consequence of the principle of respect for personal autonomy in health care, combined with the approval of palliation as a legitimate medical aim by itself. However, a recent criminal prosecution against a neonatal doctor at the Karolinska Hospital, where surprisingly high amounts of the rests of powerful sedative drugs where found after an autopsy of a newborn child following a decision to terminate neonatal intensive care treatment that had been judged to be medically meaningless, has cast doubt on the legality of the established practice. Legal scholars, as well as the National Council of Medical Ethics, has pointed out that the aim of palliation after withdrawal of life-saving treatment may conflict with established criminal law regarding killing, since palliation necessarily brings a risk for hurrying death along, especially so with powerful palliation and in the case of fragile patients in a terminal stage. And Swedish criminal law statutes regarding, e.g., manslaughter do not mention imminent death by natural causes as a factor that excludes an act from falling under the legal ban. As an effect, doctors treating severely, chronically ill patients who wished to have life-support withdrawn and to receive effective palliation up to the time of death, became hesitant to grant these wishes. This is the background to why the woman appealed to NBHW; to ask it to let her doctor of the hook created by the uncertain legal situation.
The ruling is most welcome just due to the need for having the legalities straightened out, and even more so due to its content. NBHW had two alternative positions to choose from, besides the one actually taken: (1) to deny people suffering from deadly diseases or injuries the right to have their personal autonomy respected; and effectively to grant the right of the state to force adult and fully decision competent people to undergo very burdensome medical procedures for indefinite times, or (2) to grant the medical professions a right to effectively torture their patients, by affirming the rule of respecting autonomy while denying palliation as a legitimate medical aim. The NBHW instead states clearly that adult, decision competent patients have an unequivocal legal right to have ongoing medical treatment terminated (and unwanted treatment never to be initiated), even when the treatment has a life-supporting function. It moreover rules that dying patients have a right to effective palliation within the limits set by the established practice within this branch of medicine – thereby licensing the use of anesthetics besides, e.g., morphine.
Within the palliative medical practice and profession (and, evidently, within the NBHW), it is well-established that all palliative drugs, pain- and anxiety-killing as well as sedative, bring some risks of a slightly shortened life-span. Thus, the ruling implies the legal acceptance of medical procedures that bring such risks without being balanced by the reduction of other risks for a shortened life-span. The palliative effect is recognised as a sufficiently important factor by itself. However, the question still remains how far this reasoning can be taken before the above-mentioned potential conflict with criminal manslaughter statutes is actualised. For the job of the NBHW is not to apply criminal law, only administrative law governing health care and medicine and, should there be a conflict, legal principles are clear: criminal law trumps any sort of administrative ruling.
Currently established palliative drugs and dosage can presumably cover most needs arising in this area of medicine. Especially so since the use of anesthetic for palliative purposes is a part of this practice since many years. One may hope, therefore, that an actualised legal conflict will never occur. However, the theoretical room is there, and it would take just one unforeseen case to reopen the can of worms.
To grant such wishes has indeed been established practice within Swedish health care since at least a decade back, not least in the case of old people who decline nutrition and liquid. The received opinion among doctors, officials and ethicist alike has been that the acceptability of this practice is a logical consequence of the principle of respect for personal autonomy in health care, combined with the approval of palliation as a legitimate medical aim by itself. However, a recent criminal prosecution against a neonatal doctor at the Karolinska Hospital, where surprisingly high amounts of the rests of powerful sedative drugs where found after an autopsy of a newborn child following a decision to terminate neonatal intensive care treatment that had been judged to be medically meaningless, has cast doubt on the legality of the established practice. Legal scholars, as well as the National Council of Medical Ethics, has pointed out that the aim of palliation after withdrawal of life-saving treatment may conflict with established criminal law regarding killing, since palliation necessarily brings a risk for hurrying death along, especially so with powerful palliation and in the case of fragile patients in a terminal stage. And Swedish criminal law statutes regarding, e.g., manslaughter do not mention imminent death by natural causes as a factor that excludes an act from falling under the legal ban. As an effect, doctors treating severely, chronically ill patients who wished to have life-support withdrawn and to receive effective palliation up to the time of death, became hesitant to grant these wishes. This is the background to why the woman appealed to NBHW; to ask it to let her doctor of the hook created by the uncertain legal situation.
The ruling is most welcome just due to the need for having the legalities straightened out, and even more so due to its content. NBHW had two alternative positions to choose from, besides the one actually taken: (1) to deny people suffering from deadly diseases or injuries the right to have their personal autonomy respected; and effectively to grant the right of the state to force adult and fully decision competent people to undergo very burdensome medical procedures for indefinite times, or (2) to grant the medical professions a right to effectively torture their patients, by affirming the rule of respecting autonomy while denying palliation as a legitimate medical aim. The NBHW instead states clearly that adult, decision competent patients have an unequivocal legal right to have ongoing medical treatment terminated (and unwanted treatment never to be initiated), even when the treatment has a life-supporting function. It moreover rules that dying patients have a right to effective palliation within the limits set by the established practice within this branch of medicine – thereby licensing the use of anesthetics besides, e.g., morphine.
Within the palliative medical practice and profession (and, evidently, within the NBHW), it is well-established that all palliative drugs, pain- and anxiety-killing as well as sedative, bring some risks of a slightly shortened life-span. Thus, the ruling implies the legal acceptance of medical procedures that bring such risks without being balanced by the reduction of other risks for a shortened life-span. The palliative effect is recognised as a sufficiently important factor by itself. However, the question still remains how far this reasoning can be taken before the above-mentioned potential conflict with criminal manslaughter statutes is actualised. For the job of the NBHW is not to apply criminal law, only administrative law governing health care and medicine and, should there be a conflict, legal principles are clear: criminal law trumps any sort of administrative ruling.
Currently established palliative drugs and dosage can presumably cover most needs arising in this area of medicine. Especially so since the use of anesthetic for palliative purposes is a part of this practice since many years. One may hope, therefore, that an actualised legal conflict will never occur. However, the theoretical room is there, and it would take just one unforeseen case to reopen the can of worms.
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