How far should measures go to procure organs from the dead, for the benefit of the living?
Could government initiatives render the term Organ Recycling more accurate than Organ Donation?
Why in every other area in medicine are we not allowed to presume consent (we have to get informed consent and document that we have it), but in this area government may declare that it's OK to presume it?
You don't need any medical insight to read this post; it's not heavy ethics either - and you're likely to have strong views. Still, if you don't care what is good for society in this context, or if you're not passionate about how the dying and their relatives are treated, or if you don't care what is done with your body parts (or those of your relatives) after death, feel free to skip it...
For the purpose of this particular effort, the author will dispense with his blogname and his usual tongue-in-cheek practice of writing in the third person. Both seem out of place, given the serious subject matter. The views expressed are the author's own and should not be taken to be representative of any organisation... but they are not unique... I trust that there are no factual errors in what follows, but if any are identified and pointed out (with substantiation), I will be happy to amend.
BACKGROUND.
For many years I have been involved in the treatment of patients with critical illness. It is a privilege to have been trained, and to be entrusted by society and by relatives, to provide care to such vulnerable individuals. They are usually much too ill to participate in treatment decisions themselves. An important part of critical care is support not just of the patient, but of their family too. Crucial to this is good, sensitive communication, and the creation and maintenance of trust - trust that the key priority of those providing care is delivering high quality care that is in the best interests of their critically ill relative.
A subset of critically ill patients who die despite treatment can be identified before death as potential organ donors after death. Conventionally these have mostly been patients who have suffered a catastrophic brain injury which will result in death, and whose other organs are continuing to function normally. It is important that all patients who are potential organ donors are identified and all their wishes respected, including wishes related to donating organs. Unfortunately, two of the key reasons why donation does not proceed are (a) the patient has not made his/her views known to family in advance, and has not signed up to the organ donor register and (b) families, when asked to consider the patient's likely wishes, turn down the opportunity to donate.
I have been, and continue to be, an ardent supporter of organ donation as it can transform either the quality of life, or the survival prospects, of those who receive an organ transplant. I wish to see opportunities maximised for donation (and transplant rather than wastage of organs donated). Purely as evidence that I am a promoter of organ donation, I should explain that I have been involved in local, regional and national initiatives to increase organ donation. It has been a formal part of my job. I have been called a 'donor champion' by those who like to use such terminology. I have hosted postgraduate educational meetings which were focused on this topic. In an official capacity I have corresponded with the government's 'Transplant Czar,' and I have also constructively raised concerns about some directions of government strategy on organ donation at a UK national critical care meeting. I have a few bones to pick with government initiatives and with the vocal stance of the British Medical Association, and we'll get to those bones in a minute.
I have conducted many sets of 'brain stem death tests' in order to facilitate the retrieval and donation of organs from patients who are legally deceased, but whose hearts still beat as they remain on life support technology. During intensive care treatment of these patients, it has been important to be very clear about the difference between
(a) treatment aimed at achieving medical benefit (recovery) of the critically ill patient and
(b) [only when (a) has been shown to be futile] treatment whose sole goal is preservation of organs in order to deliver the likely wishes of the patient after death, and benefit another series* of individuals.
Historically this clear separation has been considered vital in maintaining families' trust that there are no mixed motives involved in decisions to stop life support treatment when it is deemed futile. It is important to avoid any conflict of interest between (a) and (b), and I believe we have done so to date.
Alongside nursing staff, over many years I have engaged in countless difficult conversations with distressed relatives of critically ill patients. Some of these conversations have been on the subject of organ donation, but a much greater number have not, as the majority of critically ill patients who die are not suitable candidates for donation. Sensitive and difficult conversations go with the whole territory of an intensivist's practice. Unfortunately this is not always recognised by others who share the desire to see an increase in the number of organs available for donation but rarely, if ever, set foot inside an intensive care unit.
BONE #1. Deficient 'skills' in engaging, without antagonising or patronising, the ICU specialists central to delivery.
Those who don't work in my field, and whose only interest in my specialty and its patients is maximisation of the supply of organs from the dead ones, have a habit of creating the impression (perhaps inadvertently) that the reason that donation levels are not what we all would like is one or more of the following:
- ICU clinicians don't identify those who are suitable donors
- When they are identified, ICU staff don't approach families and discuss donation
- When they do approach families of dying patients, the reason that relatives turn down donation as an option is because the clinicians are inept at discussing sensitive matters.
Some of the reasons for getting this impression follow. Make up your own mind...
Relatively recently, resources have been used to create more donor co-ordinators, and 'embed' them within ICUs. One of the reasons these skilled and pleasant staff are now embedded, rather than being called when required, is that they have a task to monitor all the patients in ICUs to ensure
(i) that no potential donors are missed,
(ii) that all families of such patients are approached, and
(iii) that families are approached in a way which maximises the likelihood of their agreement to donation.
Whilst these are laudable aims, it is questionable whether it is a cost-effective use of the public purse, particularly if all/the vast majority of suitable patients were identified already, and if ICU clinicians actually are experienced and competent at handling sensitive discussions, as is quite possible.
For this reason, I was frustrated and annoyed to receive an invitation this week, c/o a government agency, to a meeting entitled "Breaking bad news: supporting the family through organ donation." The stated learning objectives for invited delegates included "an understanding of the relationship between skillfully breaking bad news, families' understanding of death, and consent for donation," and "practice of verbal and non-verbal skills consistent with skillful support of the family through donation." Note the frequent (tautologous even) use of the 'skills' word.
Do the agencies responsible for this kind of course not consider that these skills might be important in critical care beyond the area of organ donation i.e. there's a reason they may be present already? (Or maybe we're just really bad at our jobs across the board). In order to give us practice in the skills, participants will also complete at least two "breaking bad news role-plays," (as if this is the only situation where we might have to break bad news) during one of which they will act out being a physician.... streuth! Often the training at such meetings is delivered by a non-medical profit-making company, who also train personnel in the world of manufacturing, finance and government; and the company is presumably paid using money from the public purse. I don't anticipate a rush from my colleagues to apply for study leave to attend.
I and my colleagues are neither naive nor complacent. We fully recognise that professionals who have specialised in a particular field do not always perform optimally, and we wish to see continuous improvement. Critical care doctors, just like other healthcare professionals, are involved in 'lifelong learning' (or career-long at least) and always need to be looking for opportunities to improve. In my experience most are highly motivated to do so. That is the reason why we make use of benchmarking audits of performance, run specialist societies, organise scientific meetings, engage in research, and maintain Royal Colleges which publish scientific journals and monitor standards of specialist training. Locally, in conjunction with our managers, we also have pursued (and received) external independent validation for the quality of the support and communication we achieve with relatives. (Who awarded such validation? Ahem.... Government!).
Guess what.... we do this because we care about high quality treatment and support.... and we do it all by ourselves. In addition, we each undergo annual appraisal of our performance by peers and clinical managers. When it comes to skill deficiencies, specks v logs in eyes spring to mind.
BONE #2. Assumptions that differences in donation rates between countries are because of process rather than societal views.
Several changes in the last few years (including embedded co-ordinators) are the results of implementation of recommendations of the 2008 report from the government-appointed Organ Donation Taskforce (ODTF). The terms of reference for the ODTF were:
- To identify barriers to organ donation and transplantation and recommend solutions within existing operational and legal frameworks.
- To identify barriers to any part of the transplant process and recommend ways to overcome them to support and improve transplant rates.
Its membership was dominated by the transplant community/specialty, rather than by those involved in treating potential donors. Within the 16-strong membership of the taskforce, intensivists had a representation of 2, one of whom has been seconded to NHS Blood & Transplant (NHSBT). In addition to the 14 non-intensive care members, 6 NHSBT representatives were in attendance, plus 10 governmental representatives. Informed by the published UK Audit data, the 2008 report acknowledges that 40% of relatives refuse to give consent to donation. The conclusion of the audit publication was that "the biggest obstacle to improving the organ donation rate is the high proportion of relatives who deny consent."
The ODTF report cites the much higher donation rates in Spain and suggests that they have been achieved as the result of improving the training, and time available, of those requesting 'assent' to organ donation. The introduction of embedded co-ordinators was the proposed way to deliver this, seemingly demonstrating a view that ICU clinicians weren't doing the approach to relatives very well. However, there wasn't much evidence to support that view and the subsequently-published ACRE study found no increase in consent rates when requesting was done in collaboration with donor co-ordinators. What the study did confirm, however, was a previous observation that refusal in black and ethnic minorities (despite their need for transplants being higher) was much more frequent than when the patient's relatives were 'white' - suggesting a strong societal/community influence.
Perhaps an important factor which was not highlighted in the ODTF recommendation is that virtually all transplant coordinators in Spain are intensive care physicians. The ODTF's final progress report (December 2011) contains statistics which seem to confirm the findings of the ACRE study: only a modest increase (4%) in the number of Brain Stem Dead Donors over the course of implementation of the 14 ODTF recommendations. (A 25% increase in total deceased donor numbers is due to increases in other forms of donation).
Another factor is that the Spanish transplant organs from older donors than occurs in the UK, which increases number of patients considered to be suitable donors. There may also be differences in practice relating to withdrawal of mechanical ventilation in patients in the UK with poor chances of meaningful recovery. There is some concern that changing UK practice could, alongside any potential increase in donor numbers, increase the number of patients who survive with devastating neurological injury, including persistent vegetative state - which many would think is aggressive treatment which is not in the best interests of those who survive in such a state.
Yet another factor are differences in the scale of ICU provision (27 beds per million population in the UK vs 87 per million population in Spain), which in the UK encourages exclusion of patients with a poor prognosis to target the expensive resource at those most likely to benefit.
BONE #3. Presumed Consent - risk of undermining trust at a crucial time.
It seems evident that, even with full implementation of the ODTF recommendations, Spanish levels of donation are not achievable in the UK and demand will continue to outstrip supply. This is likely to drive attempts to move beyond the constraints of the terms of reference of the Taskforce e.g. to consider legislative or operational changes. One of the options increasingly talked about is introduction of Presumed Consent, which would change the emphasis from the current situation where patients have to opt in to donate (either by signing up on the national donor register or, when they are dead, by proxy through their relatives), to one of having to opt out ie it would be presumed that they agreed to donate organs if they hadn’t expressed a view one way or the other. Some in the Transplant community, and in government, think that this would increase donation rates by reducing the number of relatives refusing donation.
In 2008 the Prime Minister indicated his support for an opt-out strategy and stated that, if donation figures did not rise quickly, government would look at its introduction. Spain passed legislation for presumed consent in 1979, and some have thought that it contributed to the increase in donation rates there. What is often missed is that
(i) 10 years later the donation rate was still similar to the UK's
(ii) the improvements in donation rate followed the formation of the Spanish Transplant Organisation in 1989. Furthermore, although legislation made it feasible, Spain does not have an opt-out system; it has always been 'opt-in' in practice i.e. as the UK's is at present.
The Welsh government is already well down the road to legislating to allow presumed consent. Ironically, Wales is reported, without the legislation, to have already approached Spanish levels of donation. Donation rates in Wales already exceed Belgian rates, and Belgium has presumed consent.The ODTF, in a separate dedicated report on opt out systems, pointed out that Sweden switched to presumed consent in 1996 but continues to have one of the lowest rates of organ donation in Europe. The report also stated that there was evidence that introduction of presumed consent could result in a fall in donation rates, and cited Brazil as an example. Brazil passed presumed consent legislation in 1997, and it "had to be repealed in 1998, principally because of mistrust of government and accusations of body snatching."
Besides the issue of whether presumed consent would actually lead to a meaningful increase in donation rates, there are moral angles. In my clinical practice I have, encouraged by the Transplant community, often discussed donation as a "Gift" of Life.
I value greatly the decisions which many relatives have made over the years to consider and assent to organ donation at a most distressing time.
I'm inclined to agree with the Archbishop of Wales, who argued that introduction of presumed consent shifts the emphasis toward duty rather than a considered gift.
Is it a case of taking low hanging fruit, albeit for the benefit of others, from someone else's orchard?
Is it government's, or the transplant community's, or the recipients' to take? Is it 'strange fruit hanging'? Is it forbidden fruit? Is any fruit forbidden? If not, could some at least be bad taste?
The ODTF made clear it did not favour an opt out system. Is this another example of government appointing expert advisers and then ignoring their advice because of pressure from others?
The British Medical Association, of which I am a member, has taken a stance in support of an opt-out system. I have not been asked my opinion, despite being in the specialty directly concerned (and the BMA being aware of that), and am puzzled how and why it has reached this position. I am concerned that large numbers of doctors who take no part in the consent process for organ donation may have had undue influence. The Intensive Care Society (the main specialty society for those working in the discipline) held a pro-con debate on the subject, the outcome of which was unanimous rejection of presumed consent. The Patients Association is also opposed to an opt-out system.
The chief reason why clinicians like me are opposed to presumed consent is because we cherish the trust of relatives. 'Hard' presumed consent (in which organs could be removed against the express wishes of relatives) is highly likely to undermine relatives' trust in the clinicians. I don't much care whether or not trust in the government goes down the toilet as it did in Brazil; but I do care passionately that a good relationship with relatives is preserved throughout the entire time I'm dealing with them. Even 'soft' Presumed Consent (in which relatives still could veto donation) will give relatives a sense that they are obstructing donation if they decline it when they are uncertain regarding their loved one's wishes. In my opinion giving relatives a sense of guilt is likely to be the only purpose that can be served by 'soft' presumed consent. It is vital that a situation is not created where, through feeling pressurised, distressed relatives have their trust in the ICU team undermined in the final stages of the care of their loved one. To do so, may raise thoughts of conflict of interest, and these could create new anxieties and undermine satisfaction with treatment earlier in the ICU course.
It seems somewhat ironic that, only a couple of decades ago, consent was presumed to retain organs from those who died, or had no more need of the organs, for the benefit of other (future) patients - through the less direct route of education in pathology departments of doctors in training, or as part of research. It was perhaps thought gruesome to enter into the explicit discussions necessary for formal consent in years gone by. Furthermore, there were potential issues around legality of consent, in terms of who 'owned' the body, or body parts, of a dead person. It was also neither normal nor expected practice to enter into discussions with patients or family regarding the fate of organs or tissue removed at operation. Such organ or tissue retention practice is now considered unacceptable, and many clinicians and institutions were held accountable for it in the face of rapidly changing public expectations. It is now usually necessary to seek, rather than presume, consent to retain even tiny samples of tissue following surgery or death; and when patients have organs or tissue removed for treatment, clinicians must seek and document their wishes of regarding how the excised tissue is to be dealt with eg incinerated or buried.
Yet it seems that government ministers and the BMA have been arguing that, in this other arena, consent should be presumed to retain organs after death.
In the Merchant of Venice, a loan bargain was struck with Shylock (for the benefit of a 3rd party), and the default fee was a pound of flesh - not much more than a pair of adult male kidneys. The only thing which prevented Shylock's price being extracted was some clever legal manoeuvring. Donating organs is a precious gift. The price of presumed consent is too high. Let's not distort 'consent' law in this one area in a way we're not prepared to see it distorted in others.
BONE #4. Calls for more ICU beds to admit patients with no hope of recovery, in the hope of salvaging more organs.
For more than 2 decades I can remember intensive care specialists calling publicly for more staffed ICU beds - to reduce the number of patients who suffer from delayed access or lack of access to critical care (affecting both their mortality and their quality of survival), or to reduce the number of times patients have surgery cancelled because of lack of an available ICU bed. These calls related to patients whose own health could benefit directly from the provision of more beds. I do not remember supporting calls from other disciplines, specialties, or organisations to anything like the same extent as is occurring now for more staffed ICU beds for a different purpose.
The BMA and others have recently been stating that consideration should be given to engineering circumstances whereby more dying patients (eg those with very severe stroke) would occupy ICU beds, not for their medical benefit, but so that their organs would be in a better state for donation after death, whether or not they had expressed a desire to donate organs whilst alive.
Whilst I too would like to see more organ donation facilitated, I am not convinced that admitting more patients who will not benefit directly, and could be harmed by that change in practice, should displace those who stand a chance of benefiting directly from the expensive resource. Examples of potential harm include
(i) imposed lack of dignity of being attached to machinery during a dying process when donation/transplantation may not ultimately occur for a number of reasons
(ii) surviving in a profoundly debilitated state, rendering donation not possible - against what would have been their wishes.
I have seen little formal appraisal done of the risk v benefit in this regard by those outside our discipline who are calling for more ICU resource to be made available for this purpose. These sort of concerns will be increased even further if such an approach occurred alongside an opt-out arrangement for donation.
IF YOU HAD A WISHBONE WHAT WOULD YOU WISH FOR?
So what's it going to be? When ICU resources are in short supply, should we admit patients who would not be there for their own benefit until we find out what their wishes on organ donation are? Should we presume what their wishes are?
Recycling is encouraged in lots of areas of life, with legislation and targets relating to it. Do we want to see organ donation cease to be a free gift, and become an expectation/duty? Should we ditch the quotation "It is more blessed to give than to receive" in favour of either "It is more blessed to take than to give?" or "It is more blessed to be pressurised to give than to do so without pressure at a difficult time?" I think not. What think ye?
* organs from one patient can benefit several recipients, each of whom requires a different organ. Families can gain a degree of consolation from the knowledge that, out of the sad situation of their loved one's death, some good has been retrieved which can transform the lives of several other individuals and families, for the better.
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