|Year : 2020 | Volume
| Issue : 2 | Page : 77-81
Brain stem death: Critics and ethics
Department of Surgical Gastroenterology, AIIMS, Rishikesh, Uttarakhand, India
|Date of Submission||28-Apr-2020|
|Date of Acceptance||29-Apr-2020|
|Date of Web Publication||18-Aug-2020|
Prof. Puneet Dhar
AIIMS, Rishikesh, Uttarakhand
Source of Support: None, Conflict of Interest: None
Evolution of brain stem death certification has been linked to potential for organ donation. This has caused considerable legal and ethical controversies which are outlined. These include differences in the mode of death, challenge to irreversibilty of death; absence of laws to deal with withdrawal of support unless for organ donation, and clinical documentation of cardiac rather than brain stem death. Other legal, economic and ethical issues are discussed.
Keywords: Brain stem death, ethics of transplant, legal issues
|How to cite this article:|
Dhar P. Brain stem death: Critics and ethics. Amrita J Med 2020;16:77-81
The evolution of brain stem death and the process of certification, especially in India, have been covered in earlier sections in this issue. However, even as the steeplechase appeared to be nearing its end, the obstacle race continues to raise legal and ethical controversies!
In the Indian law, death is differently defined in two acts: the registration of birth and death act (permanent disappearance of all evidence of life) and Transplantation of Human Organs and Tissues Act (THOTA). Which includes brain stem and cardiopulmonary components. This ambiguity can be temporally separate, for example, a brain stem dead patient can take from hours to days for cardiorespiratory arrest! Hence, a single legal definition is imperative.
As physicians, it seems to us irrefutably logical that anything so clearly capable as cadaveric organ donation, of saving a life, can have any controversy! However, some ethicists and critics feel that the definition itself can be conveniently used to have parameters which are most compatible with invariable death rather than actual death itself! They feel that death occurs only when there is complete destruction of all three body functions – neurologic, respiratory, and cardiovascular. Ironically, it is the physicians who feel that the decision should be a social rather than a scientific one! Since the alternate narrative of death declaration by cessation of only one of the organs involves inevitable eventual stoppage of other vital organs, it hinges solely on the concept of irreversibility! Many reasons to criticize this is possible, for example, autoresuscitation or Lazarus phenomenon (could be delayed action of catecholamines or increase in venous return after stopping ventilation) even though there is no documented long-term survival subsequently. Likewise, extracorporeal membrane oxygenation and other techniques can now restore cardiorespiratory function to preserve organs; hence, is it possible to be sure that neural function or even consciousness cannot be restored! Similarly, it is possible not to resuscitate after an arrest, one with a potential, however short-lived, to resuscitate! Cardiac donation has also happened after circulatory death – further challenging the irreversibility! All these scenarios are extremely rare and highly improbable, but the fact that it is, at all possible, is what fuels controversy!
Historically, the brain stem death declaration process in India as well as elsewhere has been inextricably linked to the onset and propagation of organ transplantation. It is unfortunate that it continues to be so associated, even though, in a it ought to have first been a component of futility of care. Possibly because of a complex interplay of social, cultural and ethnic reasons, there has been a reluctance to take this head-on by both the medical and legal communities as well as by the government and nongovernmental organizations. Having a dichotomous (national vs. private) and watertight health-care delivery system frequently with mutual distrust, also doesn't help! In addition, the lay public gets the feeling that the organs are made available in the public hospitals (the “have-nots!”), while the recipients tend to be the “haves” since much of the complex transplant work gets done in (expensive) private hospitals. Clearly, this perceived social inequity cannot easily be addressed legally till more government hospitals start doing transplants (especially nonrenal).
A related legal point has been stressed in a recent review by Shroff and Navin and its editorial by Nagral., They highlight the absence of a legal framework to withdraw life support even though brain stem death has been declared, communicated to relatives, and organs sought but either refused or not used for any other reason. The continuity of care, in case the organs, is requested but refused and gives rise to an awkward situation where the family could potentially be suspicious of the motives of brain stem death declaration to be only to procure the organs!! There is frequently a lack of time, maturity, and ownership of who should explain the legal reasons for this continuity of care. The distrust tends to deepen with an increase in the cost of continuation of expensive intensive care unit (ICU) care. As a corollary, the ICU physicians and other caregivers become reluctant to broach the topic of seeking organs unless it is reasonably sure that the request would be accepted! Irresponsible and sensationalistic news channels and viral unauthenticated social media reports of miraculous recovery after certification of death further compound this problem. A strong point is made for seeking a clarification in the law and its rules to include withdrawal of care irrespective of demand for organs once brain stem death has occurred. This will have an important fringe benefit in freeing up scarce intensive care beds in futile settings. Till that happens, one way to avoid this distrust is to train transplant coordinators to sensitively but clearly communicate the legal loophole up front while explaining brain stem death but before seeking the organs. An offshoot from this problem is a lack of legal clarity on who takes the final call on consent. This assumes importance when there is a difference of opinion between family members. For instance, the wife who should be the closest relative and may be aware of the antemortem desire to donate has no legal recourse if a patrilineal cousin appears and refuses the consent to donate! What if the closest kin is not available geographically?! These contentious issues could of course be erased if we opt in for the “opt out” doctrine of presumed consent unless specifically expressed a desire NOT to donate. However, before we blindly go that route, we need to make sure that other murkier issues of misuse and abuse do not counter all the supposed advantages! Any modification of THOTA could help in suggesting or establishing a chain of command for the final consent to donate. Another peculiar situation could exist if the consent is withdrawn after the first set of testing – no legal recourse exists under THOTA. Should the second set of tests be done – if yes to what use? If not, we have legally not confirmed brain stem death. Hence, we are again forced to wait for circulatory death to be documented. This uncertainty increases the confusion over documenting and use of brain stem death (legally should be second set of tests) instead of circulatory (“natural!”) death in all paperwork.
The third legal lacuna exists in the domain of donation after cardiac death (DCD). It is simply not possible in our country in a controlled setting as we have no law for withdrawal of care in a terminal setting. This has not been addressed even in the later modification of THOTA after two decades. Even when this would be possible, there would be debatable issues like how long to wait, where (near relatives or in the theater), any interventions that would be permitted to reduce warm ischemia, etc., which will need sorting out. Hence, until it comes into THOTA, only uncontrolled DCD is possible. Since this would largely only yield inferior organs some of which are unusable, it would tend to feed its own unpopularity and discourage it altogether!
Another legal issue is the global lack of consensus of defining brain stem death – should it be clinical or neurological?! And timelines for declaration – would one be enough if due diligence is observed to account for all the confounders?! Especially if organ donation is not being sought – would make the whole process simpler and easier to implement. But would it really be justified to have two sets of laws for defining brain stem death, depending on end use?! Many intensivists suggest that the law should be the same irrespective of donation – will avoid sticky issues like withdrawal of consent before the second test and makes withdrawal of supports more credible. As it is, there could be problems in doing brain stem certification, especially the mandatory apnea test, for example, if hypothermic, desaturation, or if the blood pressure is unstable. Alternate methods for establishing brain stem death become necessary to document cerebral blood flow such as computed tomography, transcranial Doppler or cerebral angiography, or neurological confirmation of isoelectric electroencephalogram over 30 min after ruling out sedatives and hypothermia.
A dichotomy may appear to exist in the declaration process itself – only one physician is needed to document circulatory death, while four are needed for brain stem death declaration and that too on two separate occasions. Clearly, this is an attempt to increase transparency and confirm permanency/irreversibility and prevent any misuse or subjectivity in borderline setting. Yet, it does tend to complicate the declaration itself – this can be perceived as an undue prolongation of the bereavement process at a time when the family is attempting to hasten the terminal rites of the deceased as much as possible!One unusual situation could be exploited as a legal loophole – in a homicidal attack resulting in brain stem death, there could be a claim that death was caused actually by disconnection of life supports!
The final legal controversy exists in the interpretation of role of authorization committees for living unrelated transplants and the very low refusal rate in what could be a very suspicious segment. While it would appear irrelevant in the context of brain stem death, the systems are inextricably linked since the resultant exponential increase in unrelated transplants tends to reduce the impetus for cadaveric organ retrieval!
Ethical controversies are even more complex as the lines tend to get blurred between the myriad shades of right and “wrong!” Legally, a given definition of death tends to be sharply demarcated as a specific point in the timeline of life where it can presumably be “tested” to have become irreversible or permanent. However, in practical usage, death is actually a continuing process and ethically has a wide spectrum of definitions! For instance, the Uniform determination of Death Act and THOTA include irreversible cessation of all functions of the entire brain. However, none of the testing methods test all functions! For instance, nothing tests hypothalamic or pituitary function which could be functioning at time of death declaration! Hence, theoretically, even in brain stem death declaration, there could be a variety of definitions (and hence room for a doubt!). Of these, the three main groups include circulatory or somatic (from irreversible loss of circulation, with or without cardiac activity), whole brain definitions (all central nervous system functions lost, but single cells could function and spinal reflexes could exist and hypothalamic functions are all debatable!), and higher brain definitions. Which of these should we use as the definitive definition?! Despite the scope for this confusion, in Asia, it appears ethically and morally more justified to rely on any of these against the Damocles Sword of organ trafficking in living donors.
Organ donation after brain stem death rests on principles of altruism and utilitarianism. Neuroscientists have shown the psychological benefits of altruism. Yet, all acts of donation, sharing, helping, or sacrifice tend to involve some sort of self-interest like satisfaction, recognition among peers, expectation of reciprocity, or even the notion of karma – getting postmortem benefits!
The primary ethical controversy encountered in brain stem declaration is that of consent for donation. Logically, it would appear to be a no brainer that consent is mandatory. However, actual antemortem documentation of consent and equally importantly making friends and family aware of the same is rather rare. In these circumstances, it becomes the decision of the next of kin available at that time. Sometimes, an ethical dilemma may appear, for example, even with explicit consent of the donor, there could be refusal of consent by the friends or relatives present at the time of brain stem death declaration. This could be due to the lack of awareness of the will or because of refusal or failure to take responsibility for this decision or fear of refusal by “closer” but geographically absent relatives. It could also be a result of their own biases like a belief that it would result in a less aggressive care or resuscitation or perception of unfairness of organ allocation (e.g., why should it go to an alcoholic!). One way out is better documentation of the explicit consent – as donor cards, entries in driving license, or as advance directives in official registries. This also has an indirect benefit of popularizing the act of donation to other contacts. One of the problems with explicit consent is a perceived ethnic inequity, for example, South Asians in the UK and the Afro-Caribbean community in the USA are seen to donate less but receive a higher proportion of the donated organs.
The doctrine of implied consent on the contrary presumes that unless a wish to the contrary was made, most people would agree to donate! This is akin to a chairman in a meeting saying that a motion would go through as accepted unless someone in the meeting objects. In many European countries led by this “Spanish” model, declaration of brain death and organ retrieval has increased exponentially. There appears to be an ethical bias toward this concept as many take a high moral ground that anyone would “want” to donate for the good of society. Some even feel that it is immoral for a person to decline consent! In nondemocratic setups, this could swing ethics the other way to be akin to a totalitarian and mandatory conscription of the organs! The USA and other countries have consistently rejected this model on the grounds that it should not be implemented in the absence of priming and education of society. It is interesting that all efforts are made to push for an “Opt in” during life, but once a potential donor is identified, if we justify the consent as presumed, it may be unfair to those who were genuinely confused and had not actually made up their mind, as opposed to those who may have intended to donate but never got round to expressing that wish!
Another ethical concern pertains to the frequent violation of the separation of donor and recipient information in the hype to glorify and popularize donation. This frequently recurring breach must not be allowed to happen in the long run and is best controlled early.
Ethical problems of conflict of interest can also occur because of local legalities, for example, if a declaration is sought in a nonretrieval hospital, there could be an attempt to move a potential donor either for “better neurological care” and convert it into an in-house donor, bypassing the state authority to allocate it elsewhere. It is also known that instead of moving donor, a potential matching recipient can be moved across states within the same chain of hospitals, as there is nothing preventing anyone being listed in a separate center in a different state! Such abuse can be avoided by liberalizing licensed retrieval centers, national registries for recipients, and also use of only medical rather than geographical criteria for organ allocation.
The issue of a prisoner on death row being used for an elective death and retrieval would appear to be incontrovertibly inhuman! However, proponents would argue that it gives the convicted criminal a chance to repent and compensate by doing something worthwhile in society. A survey by the news organization MicroSoft National Broadcasting Company (MSNBC) showed 80% acceptance to death row donors and 75% of potential lung recipients voted to accept such organs. Despite this, there are clearly issues to be understood here including likely coercion, the ethics of capital punishment itself, possibility of poorer quality organs and increased warm ischemia, and violation of the dead donor “rule” – of not causing death to donate!
Financial issues can also cloud brain stem declaration and organ retrieval. Even though it is less murky than the prospect for organ trade and transplant tourism in live unrelated donation, there could be subtle variations, especially if there is a lack of transparency of the allocation process. The fact that many celebrities, politicians, and other “haves” tend to get organs (sometimes multiple!) easily, while others succumb to waiting lists, suggests that even in the developed countries, the process is far from being unblemished! In the less developed countries, there could be an implied pressure to donate for a family financially impoverished by the prolonged illness itself, as there is a tendency to “write off” some of the expenses, especially if these are compensated in the market economy of more potential for profit from the recipients! Sometimes, even the funeral expenses are paid off. There is a clear window of opportunity for an outright sale as well if prospective recipients are not isolated or blinded from the donation and allocation process. Even medical establishments, if unethical, can bump up investigation results to make a patient appear sicker for a consideration to favor an urgent allotment to a particular recipient!
Nonfinancial incentives on the contrary are less controversial yet could violate the principle that the sickest (one needing the most) recipient gets the organ. Israel incorporated nonmedical priority points for allocation, for example, for someone registered as a donor – with higher priority of those registered longer if a family member actually donated and if the impending recipient himself was a live donor., It does have an attractive justification that it fulfills an ethical principal of reciprocal altruism. In addition to countering the notion that religion (Judaism here) forbids donation, it could be an effective incentive for potential (fence sitter) donors to register. Another suggestion has been to have a government insurance scheme for pledged organ donors.
The issue of transplant tourism and organ trafficking is much more relevant in live donor transplant, yet it has managed to cast its shadow in the brain stem death declared category too. There is a potential for richer patients to move to areas with better donation rates, and corrupt practice is possible in countries with wide income disparities to bridge this chasm!
The way forward clearly entails delinking organ donation from brain stem death certification and education on brain stem stem death and futility of subsequent care. Importantly, uniform declaration of death should be included in the registration of births and deaths act. This can support medical personnel to declare brain stem death and legally validate withdrawal of supports, even if there is no consent for organ donation. It is hoped that the whole country supports withdrawal of cardiorespiratory support even if brain death doesn't proceed to organ donation as has been done by a recent Government of Kerala order. This would lead to a relatively less painful end of life experience for the bereaved family.
Another frightening scenario is the donation from a person dying of physician-assisted suicide and euthanasia which is legally permissible in some West European countries and Canada. There appears to be a gradual shift from retrieval after death to actually “conduct” the death in an operation theater! After informed consent, body cavities are surgically opened, and then, the lethal injection is given. A pure scientist might argue that logically this would minimize ischemic damage and yield the best organs in a volunteer already committed to die. However, to others, it would eerily recapitulate the specter of Robin Cook's “Coma” – no longer being in the realm of science fiction or as has been called a “death by donation!!” Acceptance by an organ hungry populace already suggests an ethical preference to bypass the (hitherto inviolable) dead donor rule if individuals volunteer to die for organ donation., Soon, those with stigma of permanent disabilities and eventually even those who cannot decided for themselves may feel the pressure to become useful! Physician-assisted homicide may appear to be a strong term but forebodes a tightrope walk between physician intent and patient awareness! Just like the palpable unrelenting pressure on an emergency live donor as the patient deteriorates; we could expect a similar guilt and subtle coercion on the marginalized and less useful members of society. As they devalue themselves, offering their organs might seem a ray of hope and we could tilt toward a not so BraveNewWorld!!
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There are no conflicts of interest.
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