Biomedical ethics Final paper Paternalism in medicine

Florine Cleary

When one turns to medicine (as a layperson) the reason for doing so generally falls under two categories either one feels something is wrong or one just wants to check that all is well or both. Essentially it is to seek help from those who are better able to discover the truth about, and if all is not well a remedy for, our physical condition. Given how important and somewhat mysterious our bodies are to ourselves our attitude will be far different in seeking medical advice than it would be in seeking (say) a mechanic’s advice. We submit to a medical professional’s superior knowledge of our biological selves at least in so far as we recognize that they are the proper people to turn to for either of the reasons I mentioned. For this reason alone those in the medical profession have to abide by a higher standard of interaction with their fellow man (as regards that man’s health). They are in a place of greater power and responsibility than most and since we place such trust in them they are morally obliged to be worthy of that trust to a greater extent. This includes recognizing that we are rational agents and the best judges of our own good though we may not posses their knowledge – accordingly they should make every effort to preserve and facilitate our autonomy by imparting what knowledge is relevant to our decision-making about our own lives. Since we seek not just knowledge but action to remedy and preserve our ability to live life what skills and tools medicine can reasonably provide is the proper execution of the role of medical professionals (once we have engaged them). The medical profession should not be in the role of policing our morals or our actions, nor should their role in bettering our lives involve infringement on our

ability to live as autonomous individuals. For better or worse we do not ask nor should they be our conscience. That they have knowledge does not mean that they may decide what may be done with it.

I am not saying that their proper role is without restrictions but rather that it is not their place to decide these restrictions in general or in specific cases. Medicine should share its knowledge about issues and advise the government and society so that the decisions about restrictions and policies may be made in concert with all those will be affected.

I wish to argue in this paper not just against paternalism on the part of physicians but also against it being practiced in medicine in general. I realize that this is complex, as medicine exists to help people live better lives than they could just by virtue of what they know and can do themselves. The science and art of medicine is employed to make life better insofar as health is a requirement for living well, the role of medical professionals is to guide us in preserving our ability to live. It dictates what we should do to guard ourselves from dieses and how to best rehabilitate injury and offers hope when we are faced with seemingly insurmountable obstacles. It would seemingly be an easy move from medicine knowing what is physically best for an individual physiognomy to knowing what is the best way of living for an individual. From what decisions are medically advisable to what decisions we ought to make. Health in itself or its particular manifestations should not be confused with living well but looked upon as a facilitating factor for living life well. The actions which best preserve our life when in conflict with

some essential and/or highly valued feature of how we chose to live our individual life may not be the best action for us to take. Life as a vegetable is not generally considered a desirable life and if the only way to preserve one’s ability to go on living was to submit to a surgery with a high risk of permanent quadriplegia an individual ought to be able to choose to almost certainly cease living just as they ought to be able to chouse to take the risk. Some aspects about what makes life worth living can be assumed as well as some of the risks or actualities which generally make it unbearable but “assumed” does not mean static or always true. An individual might be perfectly happy in an existence so long as they were not in great pain and could read, listen to music, see images and contemplate all day everyday. Another individual would want to risk a very high likelihood of death to remain highly mobile as long as they could and consider a primarily static life not worth living. An individual might choose to put everything in the outcome of a new

experimental treatment or refuse treatment to satisfy a belief that they ought to put their fate in their higher power’s hands solely. Medicine should not presume to know what would be best on the whole for people. Medicine also should not limit itself to technology and research that are difficult to abuse at the cost of potentially highly beneficial techniques and findings. Medicine itself should not have to limit its discoveries to things which people are unlikely to use for immoral or even unjust purposes. Medicine should make every effort that in its progress it does nothing unjust, and nothing immoral without outweighing good cause, but what is done with its discoveries is not its job to concern itself with until it is told to and how to by society through the government (if the progress was made in good faith and to help promote health).

Information The simplest way to begin is perhaps with the aspect of knowledge. Physicians especially are the keepers of such a type of knowledge as can have a profound impact on an individual’s life (even if that knowledge in your particular case is that everything appears to be normal). I have tried hard and been unable to come up with a scenario that would indicate a time when it would be as a rule permissible for a physician to withhold information relevant to and regarding their patient from that patient. I am not saying the physician must run every conceivable test or go over every mundane detail, but rather that should the physician find anything out about the patient which could adversely affect the patients life they have an absolute duty to inform the patient in as comprehensible fashion as is necessary. additionally they should inform the patient of the options and what they can expect. It should never be the practice that one is “better off not knowing” nor should this belief be encouraged in our society. We expect doctors to tell us all the important information about our physical condition and it is misinformation for them to even omit given this expectation. It would be unfortunate if this means that the most horrible realizations about an individuals life were given to them in the starkest darkest terms yet still it is preferable to condoning the practice of withholding information or giving misleading information that could otherwise better help an individual shape their life. It is not the case that the telling makes whatever the condition may be real – the condition is real the telling allows one to deal with it as one can. Information once known about a patient’s physical condition ought to be in the possession of that patient. The same goes for medicine’s relationship with the public at large if research yields knowledge relevant to even a small segment of the population’s ability to live their lives

than this must be disclosed (with due concern given to making sure the information is correct). If some vaccine is found to have been improperly protected from the sun and heat in transit rendering it most likely ineffective a wait and see approach should not be taken with regard to disclosing the possible effects. Or if it is found that there is a link between strawberry soda and preeclapmcia or if sun exposure can lower cholesterol in redheaded people or anything really that can have an effect on people’s lives.

One scenario that is used to argue that the physician be the gatekeeper of knowledge and only tell what he or she feels is right is the case of a couple desirous of having a boy but found (early on) to be actually pregnant with a girl. What if the doctor believes the couple will abort the girl just for being a girl? Well that’s terrible if that is what they would do with the information but unless society enacts through the government a prohibition against passing on information about the gender of a fetus than the doctor must tell. Note even a law against gender-biased abortion would not mean the doctor could not tell. The doctor cannot truly know what will be done with the information nor does not conveying the gender make it any less definite.

Another scenario would be the case of someone being discovered to have an incurable untreatable condition that will surely lead to horrible symptoms great suffering and early death. Lets look at the scenario being the same except for possible time of onset for the terrible symptoms. Scenario 1 everything the doctor knows suggests the onset will be a matter of days or at most a few weeks. Should the doctor just let the patient live what little time they have left as they always have in ignorance and free of the dread and

anxiety of something they are powerless against? “Let them enjoy walking barefoot in the park without feeling it will be the last time they will feel grass under their feet”? This position would however rob them of that sort of intense awareness (perhaps even appreciation?) and of the opportunity to deal with their fate in their own way, to make arrangements, to say goodbye, to make their last actions what they would most want them to be. True their people who are hit by a bus that are not so lucky as to be prepared but that’s just it the knowledge is there for the doomed patient to have and use. It is an infringement on their autonomy to withhold such profoundly relevant information from them. Scenario 2 the onset is certain but not likely to happen for many years perhaps decades. Should the rest of the patient’s life be in a very real way defined by what will happen in the distant future? In a way it already is they just don’t know it yet. The patient may reevaluate the general plan or lack of plan they currently have with regards to how they would shape their life. They may decide to change carriers have children earlier (perhaps utilizing genetic screening if the condition is genetic) or they may decide not to. They may decide that they want to do just about anything differently in their life – they may decide to get a second opinion and try alternative therapies. It may be possible they could have lived out the rest of their life not being affected and die of other causes before the onset of symptoms. In both scenarios it could be that the patient will prefer to die before the onset and in telling them the physician risks that they will commit suicide as a preemptive measure. This possibility does not make the information about their condition any less their right to have. The good physician may make sure to have support mechanisms in place when they tell the patient such as family or a counselor.

Imagine the head of a pastry shop should realize that some of its goods have been contaminated with a very effective rat poison but is afraid that the contaminated food has either already been consumed or that they will be unable to track down where it went when it left their shop and so decides to spare the public the anxiety as the damage is most surely done or unpreventable and why ruin not just the digestion of their valued customers but the last moments of some few of their lives. Trying to separate the fault of contamination and the self-interest that might go into not disclosing the nature of things try to imagine that this is a really good-hearted well-meaning head pastry chief by the very act of having the information and not sharing it in a timely manner whatever people should chouse to do with it (sue en mass) he has behaved immorally. Withholding the information about the contamination does not make it less true it only limits the freedom of those affected.

Life and death

The controversy over when there is potential life, life, personhood/ right to life (and what is permissible when) has been the greatest controversy over knowledge and technologies having to do with reproduction in recent times followed closely by the issues of positive and negative genetics (in which I include cloning and some of gene therapies). When life (with rights) begins is often polarized to avoid the problems that a (perhaps changing) continuum would face, so we tend to be left with either life (with rights) begins at conception or life (with rights) begins at birth. Personally I don’t see the problems associated with a continuum of life-ness or the complexities it would involve as making it

any less realistic though certainly less practically implemental.1 Until there is something of a general consensus on when we are to imbue life, I think the medical world would be acting unjustly to forgo such things as might on the most extreme conservative view be violating the “rights of the unborn life”2 but have definite promise for those already most assuredly alive. Gene therapy and stem cell research hold such promise to be helpful in easing and eradicating causes of human suffering and death that it would be not in keeping with medical ethics to forgo their pursuit to be on the “safe side” of the moral debate3. Advances in genetic screening and their application in early detection and selective use in reproductive technologies such as screening sperm, ovum, and embryo for devastating genetic dieses may technically be the beginning of widespread eugenics but perhaps it ought to be viewed as an outgrowth of the contagious dieses control policies. These dieses rather than being passed among the living are passed to the yet to live. I think that there is indeed the risk of a slippery slope here (a movement from reducing the possibility and frequency of such incurable tragic dieses as Tay-Sachs and Huntington’s to curable less severe genetic conditions which need not be managed in this way). However this again would not be the province of medicine alone to decide upon – early detection and treatment even allowing those who would absolutely not want the burden of a child with down’s and would then pass the burden to society does have
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For instance why not have the rights of the living begin at identifiably patterned electrical activity in the brain of the fetus? I understand that there is no standard week when this begins and it may tend to begin earlier in some races than others but why not have the hallmark for life be the same as that which’s cessation we take to define death? Perhaps before this point abortion would be a no-fault type and afterwards permissible for reasons such as Thomson’s but under the moral requirement to be minimally decent. 2 Unfortunately I can’t help but think that life-like-mine will never have the spark objectively found, that when we determine what has rights-like-mine the definition will be somewhat arbitrary whatever it is. I feel its safe to say at a point almost life and life are so close you would be only unwittingly incurring moral guilt. 3 However people should not have to pay (taxes) to support something which they are morally opposed to nor should its benefits be forced on the unwilling. Of course this would imply that those morally opposed to say the war in Iraq should not have to pay towards that either.

benefits and it is not clear that anyone is definitely being hurt here. We may consider it immoral to not want a pregnancy leading to a disability to continue but that it is unjust has not been determined. Certainly it would be an unjust situation if those living with a genetic disorder were made “second-class citizens” by changing attitudes in society. Likewise to desire and commit to having nothing less than a designer baby rather than just a baby that stands a good chance at being healthy would seem to be an abuse of the technology. When deciding to have children though we cannot but think that it is the natural order for parents to want what is best for them and enforcing restrictions may become difficult once the technology for having a more intelligent or athletically able child exist. This slipping into positive eugenics does not make parents who want that their child will survive to age two unjust in employing the technologies. Nor should medicine be forced to limit its pursuit of knowledge and benefits to prevent abuse.

Death by definition ends one’s ability to live one’s life but the autonomy to decide when to end one’s ability to practice autonomy should be granted the incurably suffering patient. True the act is final and we do not allow people to indefinitely or absolutely give up their autonomy by selling themselves into slavery but here there are mitigating factors which are not easily dismissed and I think morally justify voluntary euthanasia in both its active4 and passive forms with preference given to whichever is most in keeping with the patient’s wishes and as a default when this is unknown that which best eases their
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To those who fear that active euthanasia is not justifiable as it is an act of commission rather than omission I would argue that once euthanasia has been deemed permissible in a patients case the prohibition against harming another life shifts more to a prohibition against causing the further suffering that say starving a patient to death would entail. Of course if the patient finds that morally they can only chouse to end their suffering through the cessation of “heroic” medical efforts that is their call. The manifested difference in most cases between the active and passive on the part of the doctor and with regards to their emotional reaction seems like splitting hairs to me but of course a doctor can chouse what they will and will not engage in when it comes to euthanasia.

suffering and preserves their dignity. It is easy to believe there are conditions of living which make even the basic activities of life and things which would otherwise make life worthwhile, physically unbearable or impossible. It is horrible to think that we would take away someone’s autonomy and force him or her to live against his or her will in great pain without hope of recovery. One should not be facilitated in manifesting such a decision if it is rashly made – if the condition is temporary or effectively treatable, but once the powers of medicine to heal and ease fail and when hope of improvement is gone it is permissible for medicine to employ this last means of helping an individual if the individual sincerely wishes for their suffering to end earlier rather than later. I would look to the programs already established in Oregon.

Surrogacy

Just as it would be unacceptably paternalistic for a physician to decide for their patient that they would be better off not knowing the truth about a grave condition they may have because the emotional distress would be great so too is it paternalistic for surrogacy to be categorically denied legitimacy on the grounds of its potential negative emotional impact on the surrogate and this seems to be the strongest objection to its practice. Those who say it demeans women5 and children alike are missing what its very use implies- that it is vital to some people’s happiness that they be able to have children even if they cannot gestational bear the child. Surrogacy in itself is not morally corrupt and just as the abuse of some medical advancement is not reason enough to forego it, so surrogacy should not

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I think its insulting to assume that because something is solely a “woman’s labor” those who engage in it by contract are demeaned and will be respected less for it.

be medically denied on the grounds of possible abuse. There should indeed be more protection afforded the interests of the surrogate mother – perhaps just as the would-be parents have a broker the surrogate should have someone solely employed for the welfare of the surrogate. Ideally would-be surrogate mothers would have a union or some such entity. Undoubtedly bearing a child destined not to be your own to raise can have a previously unforeseen emotional impact6, but it should remain within one’s ability to chouse to risk and would-be parents should also be given the ability to chouse to risk an unpleasant outcome should the surrogate become unhappy with the arrangement or something else go wrong. Matters become complicated when the surrogate is not only a gestational donor but a genetic donor as well, and perhaps this is reason to promote third party egg donation in lieu of having the surrogate donate her egg (to keep the roles clear). As far as the child’s well-being so long as a custody battle does not ensue (as hopefully it will not with the safeguards in place) – the child of such circumstances would be in a situation somewhere between that of a “test-tube baby” and an adopted infant. They ought not feel like a commodity more so than really any desired and sought after child should feel. They have as much reason to feel secure as a child of any reproductive technology – their parents truly wanted a child no matter the obstacles. Genetic heritage can help to cement a bond between parent and child but to say that it is crucial to a child’s welfare and sense of self that their genetic parents raise them cheapens unnecessarily the long established and laudable practice of adoption and the experience of children of blended families. Children who partake of the DNA of the parents that raise them are not necessarily better off, children who are greatly desired it is easy to assume are.
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Especially given the hormones that come into play during pregnancy.

Decisions as to what is and what is not permisable are difficult and no doubt require the expertise and aid of medicine. However the resposability is not that of those in medicine to decide it is for us, as a society to govern. The greater knowledge and power to enact that are necessarily part of medicine does not make it our ethical consionce. Concern should be taken as to where we place our research energies but the pursuit of discovery in medicine should not be unduely hampered by concerns over possible nightmearish applications of what it unearths. Medicine is by its nature to help us better ourselves but this cannot be at the cost of our autonomy rather it should facilitate our autonomy where it can and aid us through our own resoned and informed choices to live our lives better. Trust must be earned or at least not violated for medicine to truly benefit us and to function within society as it is meant to. I have not gone as in depth or coverd as many issues having to do with paternalism and the role of medicine as I would have liked given more time and space but in thinking about the proper place of ethics in medicine these where the issues that jumped out at me most over the course of the term.

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