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A husband having sex with his now mentally and physically incapacitated wife: Is it ethical and is it even legal?

The 29 year old wife, 5 years ago, suffered a very severe traumatic brain injury from an automobile accident and despite long attempts at rehabilitation now lives at home under the attention and care of her husband who must also attend to the care of their own sons from earlier in their marriage. The wife is apparently alert sufficiently to show some response to visual, auditory and tactile stimulation but is unable to talk or communicate any decisions. She is paralyzed, unable to walk or move on her own, incontinent and unable to attend to her own personal care and has required tube feedings.

A few months ago, the wife became pregnant and the pregnancy was terminated by her physicians in her health interest. Despite the husband arguing that he and his wife were in a loving sexual relationship throughout their marriage, that he never divorced and abandoned her after her accident and that he believed based on his experience with her in the past and her current responses that she wanted the loving sexual relationship to continue despite her handicaps, the wife’s family considered the acts of having sex with the incapacitated wife as rape. They notified the police and started legal guardianship proceedings.

You are the ethicist and you are the judge. Were the husband’s sexual actions ethical? Were they, in fact, legal? What facts and what issues would be important to know and consider in answering these questions?

This scenario, as written here, was adapted from a case study “Sexuality and a Severely Brain-Injured Spouse” in the ethics journal “The Hastings Center Report” May-June 2010. http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=4656 There are three separate commentaries by ethicists there but I hope the Medpedia responders would answer my question here before looking at their responses. ..Maurice.
asked Jun 24, 2010 at 07:37AM in Other
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  • 2
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    answered Jun 24, 2010 at 07:23PM
    I won't look at the responses before I answer here. It's clear that this is rape. If the woman cannot communicate and is significantly incapacitated, it's not within her capacity to say "no."

    To me, the least clear cut dilemma is the physicians terminating her pregnancy. For the sake of her health, I can understand why the physicians decided to terminate the pregnancy, but it doesn't sit well with me that the husband rapes her and the physicians terminate her baby possibly against her will.

    I feel tremendously bad for the patient.
  • 2
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    answered Jun 24, 2010 at 07:57PM
    Beth, I am very, very glad that you brought up the physicians terminating the pregnancy because it brings up an essential contrast or similarity regarding the power and responsibility of the husband who would be the wife's surrogate decision-maker. If a patient has no capacity to make medical decisions, it is the legal surrogate who should provide the informed consent to the physician based on substituted judgment (what the patient through prior communication or documentations) would have herself wanted if she was aware of the current situation. In the case of the pregnancy, the husband could argue that his wife wanted to live and continue their life together even with her impairments and if the pregnancy caused her to become comatose or die she would want the pregnancy terminated. And this surrogate decision making is legal and is performed all the time.

    Now we can contrast another decision of the husband as a surrogate for a patient with no capacity to make a decision about sex: that he knew that she wanted the loving sexual relationship to continue despite her handicaps, This also could be said to represent an expression of substituted judgment on the part of the husband. The issue is: is there a difference in the ethics and legality of the two different decisions?

    What do you or the other Medpedia readers think? ..Maurice.
  • 5
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    answered Jun 25, 2010 at 01:20PM
    I waited a short while before answering this question because the issues involved are more difficult than usual. First, let me address the legal issue because, uncharacteristically, it is the easier one. Under most rape laws, it is considered a felony Rape to have sex with anyone who is physically or mentally incapable of giving consent or refusal. While I doubt the law was ever intended to cover this exact situation, and the legislative intent would certainly be argued by any competent defense lawyer, it is still rape according to "the letter of the law." As a judge, however, I would have to take many things into consideration before ruling, and I will defer that ruling until the end of my answer.

    On the other hand, the husband had a clear right to authorize the termination of his wife's pregnancy as the surrogate decision maker in this situation. This remains unchanged unless he is removed by the court but, even if he were to be removed now, an "ex post facto" determination against the husband would be unconstitutional.

    The more difficult question is whether the husband's actions involving sexual activity with his wife were ethical. While my "knee jerk" reaction on first reading is to feel it to be totally unethical, on re-reading and examination of this issue, the answer is not as clear. Let's look at some facts.

    First, the facts state that the wife, while being unable to talk or communicate her decisions, was none the less "apparently alert sufficiently to show some response to visual, auditory and tactile stimulation." If true, she may have demonstrated some degree of physical pleasure to her husband during sexual activity which, if present, might be interpreted as consent. This, however, does not answer the questions raised by the first instance of sexual activity; i.e. before any demonstration of pleasure could be seen.

    We must next examine the "totality" of the circumstances of the husband's actions, and not take them in isolation. What we see here is a young man with a wife whom he loves and cares for sufficiently that he has not left her, divorced her, or even (to our knowledge) gone elsewhere for sexual gratification - an action which most of us would find easy to excuse. Instead, he has stayed and cared for her himself, on a daily basis, while still working and caring for their children. We all know that it is a situation which is difficult at best and nearly impossible at worst, yet he's been doing it for more than five years.

    Next, we come to his argument that they had a long and loving sexual relationship prior to her accident, which she would want to continue if she could express herself. Clearly, no one knows if this is true except him, but given his actions after the accident, I would tend to find his statements credible.

    What all of this leaves are four possibilities: 1) his assessment is correct and it is something she would have wanted (and perhaps even enjoys now but cannot express it), 2) she is sufficiently physically and mentally incapacitated that she is unaware of what is happening, 3) she is aware of what he is doing, but unable to express her refusal and, 4) she is aware, doesn't particularly like it, but since it takes only a few minutes a few times per week, is "OK" with it because it keeps her and the family together. Since there is no way to reasonably assign a probability to any one scenario, let's assume they are all equally likely. That means we can assign a probability of 25% to each. In that case, there is a 75% probability that the wife either enjoys his actions, is "OK" with them, or is totally unaware. In other words, there is a 75% probability that he is doing no harm.

    Suppose we look at the other 25%, though; she doesn't like it, and would not give her consent to it if she could make her refusal known. In that case, only, would it be unethical and even here the ethics would be vague, because when examined in the totality of the situation, there is, arguably, more good than harm being done, by maintaining her at home and keeping the family together.

    For all of the above reasons, I believe that his actions, while questionable at many levels, do not rise to the level of unethical. Moreover, although his actions meet the technical definition of "rape" from a legal perspective, as a judge I would find that the 75% probability I calculated earlier would preclude my finding him guilty of rape "beyond a reasonable doubt."

    I doubt this will be a "popular" answer, and some of it even makes me uncomfortable, but absent any other reasoning, it is the way I would rule.
  • 2
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    answered Jun 25, 2010 at 03:41PM
    Eric, thanks for an interesting analysis of the issue leading to a 'reasonable' conclusion. I would certainly agree with the authority of the husband to make the clinical substituted judgment decision regarding termination of the pregnancy. What I don't know is whether the husband can "speak" similarly for his wife for acceptance of her personal sexual behavioral decision. Dors the right to make medical decisions for another through the equivalent of a power of attorney for healthcare carry over to the right for the surrogate to also make substituted judgment decisions with regard to the patient accepting or not accepting sexual activity? If it does and is accepted in law, then the judge would not have to make a mathematical probability decision. To my knowledge and you can correct me, power of attorney for healthcare may not necessarily have any right to make financial decisions for the patient. If so, then perhaps the husband could not have the power to make a personal behavior decision for the wife..

    Whether, he can or can't, under law, there is another factor to be considered in any case including clinical decision making. and that has to do with the possibility of the surrogate's significant conflict of interest for secondary gain. My hospital ethics committee always has to consider this factor when a surrogate presents a "substituted judgment" decision. We have to consider, for example, the question "'does that family member, receiving that monthly Social Security or disability check for the patient have some personal monitary incentive to keep the checks coming by keeping the patient alive rather than following the family member's true understanding of what the patient had expressed about not wanting to live?"

    With regard to the case presented, what can we say about the concern regarding the husband's own conflict of interest with regard to having sex with his incapacitated wife? ..Maurice.
  • 2
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    answered Jun 25, 2010 at 06:00PM
    Maurice,
    Merely being a surrogate decision maker for health care does not automatically confer any other power or attorney. In the case we are discussing, however, being the surrogate is only a single factor in my answer. Additionally, while being a medical surrogate decision maker confers no financial power or attorney, the husband would have that as the spouse unless his wife gave such a power of attorney to another person prior to becoming incapacitated. None of that, however, is related to his authority, the legality, or the ethics of his sexual activity. That is an issue apart from any legal power of attorney.

    Because of the complexity of the issues here, I really felt that the only appropriate approach was to consider the "totality of the circumstances;" an approach frequently taken by courts when the individual elements of a situation do not lend themselves to a straight forward solution. Here, what I was essentially attempting to do was to first isolate the individual elements, then after reaching the conclusion that there was insufficient information from which to draw a conclusion, aggregate them so that the whole picture could be considered. In short, what action on the husband's part would provide the greatest good for the greatest number of people involved while doing the least harm.

    Using my analysis, it would seem that the probability of the husband causing harm by his sexual activity with his wife was relative small, while the probability of it being a stabilizing factor for him, his wife and their children was much greater, hence my final answer. Bear in mind that given what we know, I could only offer a reasoned opinion but recognize that the opposite opinion, if reached with a reasoned approach, and not an emotional or moral one, may be equally valid.

    Finally, as for a conflict of interest, if anything I believe the husband is acting against any obvious personal interest. If he only considered his own interests, he would have placed her in a nursing facility, divorced her, found another partner and continued to raise his children in a more conventional environment. Instead, he ignored his own best interest and perhaps that of the children, and has placed her before theirs.
  • 2
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    answered Jun 25, 2010 at 06:15PM
    Maurice, as an afterthought, I read the answers given in the article and realized that there was a question whose answer I implied, but did not give. I would allow the husband to maintain his custodial position and deny the family's petition. I also found it interesting that, beyond this, they seemed to find the case as difficult to define and answer as I did.
  • 2
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    answered Jun 25, 2010 at 07:55PM
    Eric, by the way, if you read the text of original case, you might have found (apparently you didn't) an editorial error which casts an entirely ethical/legal face to the story. I found the error (though not even considered by the three groups of commentators) and have reported it to the publication editor. He admitted the error in a return e-mail.

    In the original story, the family had 4 year old twins! 5 years ago the wife had the accident. That would start her pregnancy with the twins after the accident! If those were the facts and without any concern of the parties about that sexual act and associated pregnancy, why should the wife's family make a legal fuss about her more recent pregnancy. Doesn't this change the ethics and If, as a judge, you were considering the family's current legal requests, in view of the past history, wouldn't you just throw the case out?

    Notice, in my presentation of the case here, I created the ethical/issue by having the children born prior to the accident. This editing error is a perfect example of how important the facts are in any decision about the ethics or the law of acts or actions. ..Maurice.
  • 1
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    answered Jun 25, 2010 at 07:59PM
    Oops! Sorry..my typo error: in line 2 I wanted to write "which casts an entirely DIFFERENT ethical/legal face to the story" ..Maurice..
  • 2
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    answered Jun 25, 2010 at 08:15PM
    Before signing off today, I am still interested in a response by those Medpedia readers who believe that under any circumstances of the mental state of the woman (alert, stuperous or comatose) or relationship to the male, as long as permission for sex was not given by the woman, unconsented sex is rape and there is no excuse and no extenuating factors or circumstances the man can give to change that conclusion. How can this absolute view be supported? ..Maurice.
  • 2
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    answered Jun 26, 2010 at 04:57AM
    What facts and what issues would be important to know and consider in answering these questions?

    There is an unresolved conflict central to answering these questions. The scenario proposes that: (1) “The wife is apparently alert sufficiently to show some response to visual, auditory and tactile stimulation but is unable to talk or communicate any decisions”; (2)“… the husband …believed based on his experience with her in the past and her current responses that she wanted the loving sexual relationship to continue …”

    These two premises are contradictory. And they are presented in a biased manner. The first premise (the wife cannot make decisions) is presented as an objective fact without any reference to how it was made or by whom. If she can show response to sight, sound, and touch then exactly how was it decided that she is incapable of making *any* decisions? The opposing argument made by the husband is not simply that his wife is having a physical response to a stimulus; He is claiming that based on a deep and longstanding relationship he is able to interpret some of her current responses as decisions. If the husband is correct, then the efforts of the state (or the wife’s family) to deprive her of intimacy she wants is the unethical position that deprives her of human dignity.

    In order to answer the ethical questions posed here it is necessary to find some way to evaluate these two conflicting positions about the wife’s capacity to communicate her wishes in any given situation. If the physicians in the scenario felt free to terminate her pregnancy without considering what her wishes might be, perhaps someone outside her medical team is needed in order to explore the basis for the husband’s claim that his wife is capable of communicating certain kinds of decisions.

    [After writing this I was interested ---and somewhat surprised --- to see some support for this position in the commentaries. In one of the commentaries there was even tacit acknowledgment that by observing the wife’s behavior, her wishes could be inferred by the judge.]
  • 3
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    answered Jun 26, 2010 at 11:04AM
    "It's really none of their business": this suggestion came from a female visitor to my Bioethics Discussion Blog where I had posted the very same adapted scenario which I put up on Medpedia. I thought it would be interesting to post her comment here since it goes along with Wayne's alternative interpretation "He is claiming that based on a deep and longstanding relationship he is able to interpret some of her current responses as decisions. If the husband is correct, then the efforts of the state (or the wife’s family) to deprive her of intimacy she wants is the unethical position that deprives her of human dignity."

    My blog visitor wrote: "Since the scenario states that they are still married, that would suggest that such sexual encounters would be perfectly legal. Ethical, that would depend on who you ask, I suppose (I'm sure that's why you posted the question). Personally I think that the wife's family is over-reacting and frankly, it's really none of their business. It wouldn't be if they were just a "normal" married couple, and her disability should not change that. He is her primary caregiver, but that does not negate their spousal relationship. (Do they remember "for better or for worse, in sickness and in health"?) From the description it's not like she's so incapacitated that she would derive absolutely nothing from a continued relationship (including the sexual aspect) with her loving husband. I think that denying both of them this part of their former relationship sounds too close to those who think people with disabilities of all sorts are supposed to be completely asexual beings.

    It would be entirely different if she responded to these encounters negatively with whatever limited reaction she might still have, but since that doesn't appear to be the case from the description, I see no problem here. It would be far worse if the husband had just given up on their relationship altogether and divorced her. That's not uncommon when a spouse becomes suddenly and permanently disabled."

    An interesting sub-topic follows her comment: "I think that denying both of them this part of their former relationship sounds too close to those who think people with disabilities of all sorts are supposed to be completely asexual beings." But suppose the wife's severe brain injury did, in fact, leave her in a permanent state without any interest or feeling for a sexual experience and wouldn't recognize any sexual activity on the part of her husband as anything sexual. If that was the case, should that state of brain function of this injured wife deny or prevent or make illegal customary sexual pleasing activity on the part of the devoted husband? Which creates the illegality or even unethical behavior:on the part of the husband a "no" response by the wife or the wife's total ignorance of the meaning and intent or nature of what the husband is doing or both? If the latter of the two possibilities, the question is why illegal, why unethical? Might there be some wives, without brain injury, who have no interest in sex but allow their husbands to find their own value or pleasure in sexual intercourse? Just some further issues to consider. ..Maurice.
    • I believe your blog visitor makes a lot of assumptions about marital sex. If the woman is unable to give her consent, I could understand why her family is against the husband. Of course, her family could've always hated the husband before the accident and are trying to manipulate things to get the husband in trouble.

      There's also a difference between legality and ethics. Something could be totally legal but highly unethical.
      Beth L. Gainer commented Jul 07, 2010 at 08:11PM
  • 2
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    answered Jun 26, 2010 at 11:46AM
    Severe brain injury can take many forms, and I am not sure I know enough about this woman's ability to give consent in her current circumstance. While people with disabilities have every right to enjoy whatever people with abilities enjoy, I don't know if that is what this is about. Again, I would want an assessment to see if the wife is truly able to give consent. Also, we are hearing the husband's version, that it was a loving relationship before the wife's injury. But perhaps, to play the devil's advocate, he enjoys pain, dominance, or control, and this is something only he and his wife are/were aware of. We don't even know what the husband's mental health status is, nor his proclivities. He is likely a loving and supportive husband, but when someone is as disabled as the wife is, she needs her family to at least co-advocate for her. Two more things - I thought implied consent was pretty much eliminated with the adoption of marital rape laws in many states as well as many countries? I am not sure a physical reaction or a history of an apparently loving relationship can qualify as implied consent anyway. There can be a physical response but it is not a consent. I learned this when I studied the legal aspects of child sexual abuse. Whether a child responds physically, or gives verbal consent, is irrelevant, at least where I worked with police on child abuse cases. That is why there are statutory rape and other laws. As for the ethical aspects, I am wondering why the husband cannot forgo sexual relations and focus on the emotional part? Other spouses have been known to forgo sex when the partner is no longer capable of the act or of consent. What are his cultural values about the role of women, and especially a wife? Some men still think women are property, even though much progress has been made in gender rights. Until some way can be found to help the wife communicate verbally or via some supportive aid, I would be concerned about the husband's behavior from both a legal and ethical perspective.
  • 3
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    answered Jun 26, 2010 at 06:43PM
    It seems reading the comments here and in the Hastings Center Report, there is a particular need to find a way to establish whether the sexual activity was consensual. What if, relative to the patient's mental/neurologic condition, there is no method available that could clearly provide and assure a valid answer. What then? Does the absence of a method nevertheless bias a conclusion against the husband's explanation? Might it be easier and more reliable to investigate the husband's description of his observations and interpretation of the observations, how he explains previous non-related family or work issues, evidence of past beneficent behavior toward his wife and family and how he would handle the sex activity issue if he knew his wife rejected it or would be cognitively unaware of what was going on with the activity. Just some suggestions.. ..Maurice.
  • 1
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    answered Jun 27, 2010 at 03:08AM
    I don't think we'll ever find an answer to what actually happened, and, frankly, the husband's story sounds dicey at best. There's no way, I think, to determine whether the sexual act(s) were consensual.

    I totally agree with Kim. Marital rape is more common than is reported. What the husband says cannot necessarily be believed, either.

    Maurice's finding the error puts the forced abortion of the latest unborn child into focus, too. If they had twins while she was in this condition, then what right did the doctors have to terminate the pregnancy? Unless something differently medically was happening to the woman, it seems unethical to terminate her pregnancy against her will. And I suspect her husband wanted it that way, which further takes away her rights.
  • 2
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    answered Jun 27, 2010 at 09:28AM
    There is no information given about the husband's wishes with respect to the pregnancy, so unless the scenario is taken from a real case, there is no way to determine this. However, if we accept that the twins have already passed their fourth birthday and the accident was 5 years ago we must decide whether to assume that the wife was already pregnant at the time of the accident or whether conception occurred during the first three months after the injury, while she was still in acute rehabilitation. If we make the second assumption then this significantly changes the scenario.

    Another article in this same issue of the journal refers to a recent report in the NEJM about research on the potential use (at some time in the future) of fMRI to establish reliable communication with patients like the wife in this scenario. But these authors also urge extreme caution with respect to over-interpreting this kind of data. Hopefully a family like this would be working closely with compassionate and objective professionals who could assist the husband in evaluating whether his wife is capable of making a decision and also monitoring the situation so as to provide advocacy for the wife if needed.
    • Really well said, Wayne.
      Beth L. Gainer commented Jul 07, 2010 at 08:05PM
  • 2
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    answered Jun 27, 2010 at 12:46PM
    In the assignment of blame or lack of decisional powers, I think it would be interesting to look not only at the law or societal ethics but also religious proclamations, not that this will perfectly establish the intent of all the parties in this scenario. But it is worth considering.

    The Rev. Jason Poling is Pastor of New Hope Community Church in Pikesville, Maryland wrote in the Baltimore Sun ( http://weblogs.baltimoresun.com/news/faith/2010/03/terry_schiavo_anniversary.html )
    the following in response to the 5th anniversary of Terri Schiavo's death and in relation to the actions and voices of her parents and family in the years leading up to her death and thereafter.

    "Among the most important things we learn from Scripture about the nature of marriage is that every wedding involves two funerals. “A man shall leave his father and mother and cleave to his wife, and they shall become one flesh” (Genesis 2:24). Jesus commented on this verse, “So they are no longer two, but one” (Matthew 19:6). When I officiate at weddings I always point out that from that day forward the people being married are entering into a change in the very essence of their being: no longer will either be himself or herself apart from the other."

    How do you read these Scriptures? The family of the married pair are not part of the intimacy of the life of marriage and that the married pair can consent with one voice. Do you think that the Scriptures then simply answer the ethical and legal dilemma that has been so extensively already discussed by the responders here on Medpedia? ..Maurice.
  • 3
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    answered Jun 27, 2010 at 08:15PM
    First, let me congratulate everyone participating on this Question for producing such a great and thoughtful discussion. Second, I referred the link to this Medpedia question to a male physician whom I personally know and who apparently read the comments here but was not able to post here. I was informed as to what he wanted to write and the following was his response:

    "The females are certainly eager to find that the husband should give up sexual activity with his
    wife. I suspect that, if they could accomplish their desire to withhold any sex
    from him, he would be gone to another partner before long.

    Michael"

    That should stimulate some defense by the women writing here!

    Third, I don't want the discussion to this dilemma to end without another consideration and a complete twist to the scenario, one which I can't find was yet discussed here. Here it is:
    Let's turn the genders around! Now the HUSBAND was the marital partner who was injured with the same neurologic outcome as in the original scenario. The next part of the story, I will need a little help to create. But it turns out that the wife was discovered (how?) in the act of manipulating the husband's penis in an apparent context of sexual activity and this has been going on repeatedly. The wife admits the sex acts she was performing but states she had been in a loving sexual relationship with her husband and though he was unable to communicate his consent to participate, she knew from throughout the marriage and his current non-verbal responses that he desired to participate. (I would caution from a physiologic basis for assuming some degree of erection represented consent or pleasure.) Now, would the wife's family or indeed the husband's family have a basis for calling the cops and sending the case for legal guardianship proceedings or would you expect that they would even do that?

    Again, I think it is important that we consider the ethics and legality in this reverse gender scenario. What are the differences and what are the similar aspects of making a decision about the wife's behavior? Good luck! ..Maurice.
  • 2
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    answered Jun 27, 2010 at 09:41PM
    Maurice, I've been reading the responses to the question with fascination because there seems to be an immediate assumption that the husband is doing something terribly wrong, that enormous effort and expense needs to be gone to in order to ascertain the wife's ability to make a decision regarding sexual relations with her husband and to immediately accuse the husband of rape which, in many cases is a purely legal definition, like "insanity." Moreover, there appears to be a threshold assumption by many that the very act of having sex with his wife if she is unable to consent, is somehow inherently bad or evil.

    Making the assumption that the wife cannot give consent or refuse, and that the husband takes proper precautions to avoid pregnancy, I doubt that even the wife would object if she could, given the good that has come out of it; namely a husband that takes care of her, not one that places her into a nursing home and divorces her, and her children living in a home where their mother is being lovingly cared for by their father (certainly a good role model in that regard). How many men and women, in a "perfect" mental state, stay in loveless, sexless marriages just to accomplish far less? More than most of us would care to admit, I believe (some people stay together just to keep their health insurance).

    When the "totality of the circumstances" are taken into account (the standard a court would probably use in this situation), while I agree that the husband was negligent in allowing her to become pregnant in the first place, I doubt any court would convict him or anything, or take away his guardianship so that the brothers could put her into a nursing home. After all, I'm sure none of her family was attempting to have her moved into their home so they could personally care for her. While I believe that forcing sex onto anyone, male or female, married or not is wrong and is now illegal in most, but probably not all jurisdictions, and that sex with someone physically or mentally unable to consent, initiated by a stranger or acquaintance would be wrong under any circumstances, neither is the case in this instance, and I would urge the readers to consider the "overall" good and bad here, in other words the situational ethics, before sitting in judgment.

    Finally, while I don't know how people will answer your last question now that the issue has been raised and they know what answer they are expected to give, I believe that we as a supposedly enlightened nation are perpetuating a gender based double standard. Most people wouldn't think twice if a wife were the one initiating sex with a brain injured husband. In fact, there would undoubtedly be jokes made about how he is enjoying it.

    The facts in this case are tragic. The wife has suffered what some would call a fate worse than death, and the young husband, in the prime of his life, has suffered a catastrophic loss of his life's love, and the mother of their children. He hasn't left, he hasn't abandoned her care to an institution, he hasn't run off with a woman who is capable and willing to fulfill "all" his needs, he is keeping his wedding vows when many, if not most men AND women would not. Perhaps a little empathy and the understanding that this is a highly unusual situation that demands a rigorous ethical and legal examination of the entire situation, not merely the husband's sexual acts are what is needed here. I believe such an examination, independent of personal bias, would lead to the conclusions I reached earlier.
    • As another afterthought, I agree with Kim that religion and scripture should not be at issue here unless raised as an affirmative defense by the husband. While the origin of marriage is religious, our modern usage is in the civil context where it represents what is essentially a partnership contract. This partnership grants certain rights and obligations to each spouse, but does not deprive either of their basic legal and human rights.
      Eric E Shore DO, JD, MBA commented Jun 28, 2010 at 02:42PM
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    answered Jul 07, 2010 at 01:44PM
    I agree with Eric that, in the absence of evidence of malice and with consideration of the care he is taking with her, this appears to be his decision. I would just add that some support for him might be a better approach than an attack. He could probably use physical, emotional and spiritual support, along with information on sexual behavior, etc to more adequately take care of this wife he obviously loves. I find that caretakers often have a score of "back seat drivers" when it comes to caring for disabled people, but those same "back seat drivers" rarely show up to lend a hand. This will be a larger and larger problem in our country as the population ages. Great post.
  • 2
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    answered Jul 07, 2010 at 04:18PM
    Thanks, Kelly. Much of my medical practice was Geriatrics and I found that what you said is definitely true. Actual care givers were caring, easily approachable and accepted suggestions as well as sometimes arriving at novel approaches to problems while the "back seat drivers," as you called them, were the ones who only visited rarely and then insisted upon changing or questioning everything and trying to make everyone jump when they said so. The only consolation for the physicians, nurses or actual care givers was that they would soon be gone and probably not visit again for another few months.

    Let's hope that with improved lifestyles as well as current and future discoveries involving agin
  • 2
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    answered Jul 07, 2010 at 04:53PM
    Eric wrote in response to my last question regarding switching the gender of the patient in the scenario "Most people wouldn't think twice if a wife were the one initiating sex with a brain injured husband. In fact, there would undoubtedly be jokes made about how he is enjoying it." If "most" is a valid statistic (and I agree with Eric that it probably is) then what does this represent in terms of our society displaying injustice (justice, a principle in ethics) for the caring husbands who may be involved in situations similar to the written scenario? Why can't there be gender equality in terms of consensual sex? Does society need some ethics education? Or, on the other hand, are we missing a worthy explanation? ..Maurice.
    • I wonder the same thing about why in society gender equality doesn't exist in terms of consensual sex. Both women and men are targets of sexist attitudes.
      Beth L. Gainer commented Jul 07, 2010 at 08:04PM
    • The answer is clear, and has been the subject of a variety of "stand up" routines by such people as Bill Mahr, Louis Black and Chris Rock indicating that reverse gender discrimination exists today. There are many things that if said about women would get jeered, but draw cheers and applause from women when said about men. Of course, it could also be that women, having been historically discriminated against are more sensitive about these things than men, but it is a real problem that needs to be addressed across the board.
      Eric E Shore DO, JD, MBA commented Jul 08, 2010 at 10:46AM
    • Eric, you raise a really good point. There is this sexist attitude against men in our society. The one term I'd disagree with is "reverse gender discrimination" because discrimination is discrimination, no matter what the sex of the person is.
      Beth L. Gainer commented Jul 08, 2010 at 11:17AM
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    answered Jul 07, 2010 at 08:01PM
    I still agree with Kim that it is essential to know the woman's ability to consent to sexual relations. If she's unable to consent, how do we know she consented? Maybe she did, indeed, consent, but if she cannot communicate, how do we know what her will was?

    There are just three points I want to make here, and this is about ethics, all not necessarily about this particular case:

    1. Sex without consent is rape, even in a marriage, regardless of who the offender is. Even if there is no jail time, it's still rape.
    2. If genders are reversed and the woman's husband was unable to communicate consent, the woman would be guilty of rape, just as women who hit their husbands are guilty of domestic violence. It is unfortunate about the sexism against males -- that some in our society wouldn't blink an eye if a woman was committing a sexual act against a man. On the other hand, people mistakenly believe that all sex in a marriage is fine whether or not it involves consent.
    3. Marital rape does not necessarily involve malice. Rape occurs when one party does not consent to a sexual act. A husband or wife may believe he/she to be doing this out of love, but that doesn't mean it's not rape.
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    answered Jul 08, 2010 at 08:13AM
    Ability to form and convey consent is key, irregardless of matrimonial status. That is the law.
    Ethics is another matter, and is apparently subjective, as is clear in this discussion.
    • Very well said, Kim!!
      Beth L. Gainer commented Jul 08, 2010 at 09:38AM
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    answered Jul 08, 2010 at 12:03PM
    The following is referring back to my last response from yesterday regarding gender inequality.
    Eric wrote above regarding the gender sensitivity or acceptance with regard to "jeers" and "cheers and applause" that "it could also be that women, having been historically discriminated against are more sensitive about these things than men" However, it is clear from my bioethics blog thread on patient modesty issue in the healthcare system which has been going on for the past 5 years, the responses clearly show that male modesty issues are not ignored by men and are often totally ignored or unattended to by the system. You can get a taste of what I am writing about by going to the current Volume of this discussion: http://bioethicsdiscussion.blogspot.com/2010/07/patient-modesty-volume-35.html#comments

    In many ways now, men are discriminated against and society appears to be still looking in the direction of women.

    Though I disagree with the estimation of less "sensitivity" among men, I heartedly endorse Eric's final "it is a real problem that needs to be addressed across the board." ..Maurice.
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    answered Jul 10, 2010 at 10:42AM
    My question is, What is "wrong" with the husband? Granted to marry to love, honor and cherish, for better or worse, till death do you part as the vows say (who came up with those vows anyway?) but he is doing nothing of the sort. Don't know if this is legal or not but surely is an ethical issue and definitely a moral one. Should the child be conceived just because a quirk of nature--sperm uniting with ovum--result in a child who was not planned for, and will not know the love of both female and male parent? This "husband" should be evaluated psychologically to begin with and the wife placed in a facility where she will be cared for and not "raped". This is despicable.
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    answered Jul 10, 2010 at 11:57AM
    There is little disagreement among any of us that the conception of a child in the circumstances described here is at least negligent and certainly wrong in the case of this husband and wife. Yes, I too believe the husband would do well to see a Psychotherapist. Clearly, there is more than the one issue here that needs to be dealt with. Frankly, the issue of whether there was consensual sex is probably a small part of a much larger constellation of problems. I do not grant, however, that the husband's actions regarding sex with this wife are to be considered wrong under all circumstances, which except for Kelly, seems to be the feminine view. This scenario raises much larger questions that need to be answered concomitantly.

    First, where one spouse is in a persistent vegetative state, is it (and should it be) the responsibility of the family to personally care for the individual or should society encourage them to be placed in a "facility," as Rhonda suggests. Having been a Medical Director of more than one of those "facilities," I have mixed feelings. There are good ones, bad ones, and others all along the spectrum in between; in some she would be likely to be raped by strangers. This option has the societal benefit of getting "these people" out of sight and mind, so that the remaining family can move on, but is that what we as a society really want? How often do we reminisce about times when family, not society cared for our loved ones; where parents lived with children when they became enfeebled, not placed into nursing facilities because it is easier or they have more "activities?"

    Secondly, what is the legal status of such an individual or, more to the point, what should it be? At one end of the spectrum their fate would be entirely the province of the family or guardian(s) while, at the other, they would become wards of the state, with impersonal bureaucrats making the decisions. Believe it or not, both have their advantages, even for the individual involved, since there would always be some conflict of interest for a family member, while none would exist for the bureaucrat.

    Thirdly, how do we define "harm?" Was the wife actually harmed if she had no knowledge of her husband's actions? Should such "harm" be separated into "degrees" as we do in criminal law? For that matter, was she really harmed even if she was aware of what was happening, or was she merely inconvenienced for a time? It seems to me that we are all projecting our own versions of morality and ethics onto her and her husband because we, ourselves, are unsure.

    There are no absolutes in ethics or morality and, even in law the only absolutes are what we place there, and vary from culture to culture and time to time. There are those of us who would find the artificial prolongation of life abhorrent, while others would be equally dismayed if someone whose life could have been prolonged by modern technology was allowed to die. Moreover, these arguments and disagreements will grow deeper over time and with increasing scientific abilities. If we can create life from inorganic matter, does that give us the absolute authority to destroy what we created or is life, once created by anyone, equally sacrosanct? If we develop the ability to lengthen life indefinitely, should we, and thus end human evolution except for the changes we decide upon ourselves? For that matter, should we be directing our own evolution? Do we have the wisdom to know which characteristics are survival characteristics and which are not?

    None of these questions are idle speculation. We now have the ability, albeit on a (currently) limited scale to create life and direct its course. We probably have within our reach, the ability to prolong life and youth indefinitely, or will have in the next few years. We certainly are within a few years of being able to direct our own evolution and even create "designer people." If we cannot agree that there is more than one side to whether a husband can have sex with his wife if she is in a vegetative state, how can we ever answer the more momentous questions?

    Perhaps he was wrong, perhaps he was right, or perhaps there is neither right nor wrong unless we can show actual harm to his wife (not counting a perfectly avoidable pregnancy). In any event, I believe charging him with rape would be overkill and taking her from his care would be only in his best interest and, perhaps their children, not necessarily in hers. Objectivity should reign here, not personal bias (except for mine, of course).
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    answered Jul 10, 2010 at 04:33PM
    I know I am pressing for an answer, but Rhonda, what if the incapacitated family member in the scenario was the husband? ..Maurice.
    • From what I know of men and being past the "middle age" era, have had experience with the male mind. Women for the most part would tend to care for their husbands no matter what and sexual activity would be the furthest thing from their minds. I have had numerous 80 years old women who have cared for their stroke plagued husbands, or other conditions, and they have gone without sex or have resorted to other measures whether another male friend, or vibrators. Talking very openly with the and asking these questions about sexual needs to them, they have all said, the care of their husband came f
      Rhonda Bright NP commented Jul 11, 2010 at 10:25AM
    • "Sugar and spice and everything nice,
      That's what little girls are made of.
      Snips and snails and puppydog tails,
      That's what little boys are made of."

      My concern is that perhaps intrinsic with regard to the ethical issues which deal with marital behaviors, there exists gender stereotypes with regard to sexual motivations and degrees of attention to provide the comfort and beneficent behavior toward the marital partner. The question is whether these commonly accepted stereotypes have a statistical basis to validate assumptions. Does anyone know of any studies? ..Maurice.
      Maurice Bernstein MD commented Jul 11, 2010 at 08:26PM
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    answered Jul 10, 2010 at 07:27PM
    I agree with Eric about there being a vast quality of facilities, several of which contain people who are raped and that facilities are often negligent. I also agree that this is a very complex case, and we really don't have all the information and probably won't. However, I disagree with his answer to "Was the wife actually harmed if she had no knowledge of her husband's actions?"

    When there is nonconsensual sex, then there is rape on the part of one of the parties. If the wife didn't know her husband was having sex with her, then she was raped. It's the same type of scenario if a woman is drugged or unconscious from alcohol, and a man has sex with her. He can claim it was consensual, but the woman who was unaware of him having sex with her was raped.

    I'm not male-bashing here. If the unconscious person was a male or it was the wife who had sexual relations with an incapacitated man unable to consent, then it is still rape.

    And rape = harm.
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    answered Jul 10, 2010 at 07:49PM
    Beth, thanks for your input!! I understand and generally agree with your statements. In fact, I have created and singularly caused passage of legislation on these very issues, with which I am sure you would wholeheartedly agree. However, I have known 2 men in similar situations to this scenario and it is not always as clean cut and clear as one would like to believe. Both of these men continued to care for their wives. Both dated outside the marriage - - after a time. It is hard to change one's deeply felt feelings and beliefs. He needs assistance and help with transitioning to the new situation. I don't think prosecuting or calling him crazy fits this situation at all. This is personal, serious and again, I refer to people who are not caretakers but love to criticize the situation. Rather than labeling and legaling, might be best to support and assist this man with transitioning to a healthier sexual subject. He could use some help to understand what is going on here. He needs talk, caring and education, not a pill or handcuffs. I think as a society we can do a better job of caring for one another, rather than prosecuting, humiliating and hurting one another quite so much. Maybe I'm a daisy!! Probably so! HA :)
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    answered Jul 10, 2010 at 10:48PM
    Without belaboring "rape=harm", one still would like to understand "what is the harm" if the alleged subject of the "harm" is unconscious or unaware of what is happening? Is the "harm" physical or is it a moral harm. If precautions had been taken to prevent pregnancy or sexually transmitted infection and there was no physical bodily injury, I would presume one couldn't describe the harm in this case as physical. If moral harm, who is actually being morally harmed-- the unconscious or unaware subject or is it others who are aware of the rape or society in general? And if not the unaware subject, how can one describe the harm to the others? What one has to decide then in the original scenario as presented but without the story of pregnancy, whether an apparent loving and caring husband by having sex with his incapacitated wife and without her direct consent but in the context of a stable marriage could possibly have produced a moral harm to her or even to those who discovered the act or to society.

    Here is another example of the issue of whether actual harm in a moral or ethical sense can be applied directly to a subject if the subject is totally and permanently unaware that some act has occurred. A wife was lied to by her husband but never in her remaining life was she ever aware that a lie had occurred. Has she been, in fact, morally harmed? Again, who is harmed? And then again my starting question "what is the harm?" ..Maurice.
    • Maurice, I raised the question of who was harmed for the very reasons you've elucidated. "Rape" is a legal term with a specific legal definition (depending upon the jurisdiction). Harm is another matter. Let's ask the same question in the form of an age-old question; "if a tree falls in the forest and no one hears it, was there any sound?"
      Eric E Shore DO, JD, MBA commented Jul 26, 2010 at 05:54PM
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    answered Aug 08, 2010 at 09:28PM
    Eric, sorry for the delayed response (I was on vacation) but in reality a sound wave has the classic capability of breaking some fine glasses and there might be no one to hear the sound but would find the broken glass later. Thus the sound could have some impact ("harming") on an object without being "heard". So I would dispute that the analogy applies to "a wife lied to by her husband but never in her remaining life was she ever aware that a lie had occurred." Nevertheless I suspect you do agree that, similarly, if the husband had sex with a wife that was unaware of what was happening and did not get pregnant nor infected with an STD and with a background of a loving marital relationship, we can't really say that she would have suffered "moral harm"? I do worry about the application of "rape" and whether the term applies to every possible circumstance such as a husband having sex with his wife who is unaware of what is happening but she has repeatedly given her consent in the past and could be assumed in a loving relationship to do whatever was necessary to satisfy the sexual needs of her husband. Perhaps, at this point, I am being excessive in my philosophical arguments. So I quit now. ..Maurice.
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    answered Nov 26, 2010 at 09:53PM
    I'll offer some potentially unpopular thoughts.
    First rape is defined by statute. In some jurisdictions a husband is legally incapable of rape- other crimes perhaps but rape no.
    Second- marriage offers a strong presumption regarding consent for sex. Rape occurs in the setting of lack of consent under most statutes- not simply a lack of declining. In virtually all cases rape becomes a "he said-she said" situation (recall Kobe Bryant). In this case with the husband and others noting some awareness and communication as well as the inherent difficulties in prosecuting such a case it's a legal vacuum.
    Third- we are compelled by our sense of revulsion yet the emotion needs to be controlled and ask questions such as "how impaired is too impaired?" Would we be concerned if the couple were both very intoxicated? How about is he were simply markedly mentally retarded but lived independently? This patient differs from someone who is just "undersmart" only quantitatively not qualitatively. Any division between decisional and non-decisional is arbitrary.
    Fourth - would we be having this discussion at all if the roles were reversed? Supposed an intact wife became pregnant by her impaired husband? I'm suspicious we wouldn't raise similar concerns.
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    answered Jan 08, 2011 at 11:34AM
    First let me begin with my background, which I feel will give some better insight into this situation. A little over a year into my marriage my wife (19 at the time) was in a car accident that left her with a severe brain injury. I was 22 at the time and serving on my second enlistment in the Army as a Ranger. We spent 9 months in 6 different hospitals where she was in a coma for half of that time. The other half she was diagnosed as being minimally conscious, which is also what her current condition is. Her level of cognition very closely mirrors that of the wife in this situation. I have to feed her through a g-tube and perform all of her care. The Army forced me to either place her in a nursing home or be discharged. I chose the latter and have been caring for her myself ever since (9+ years), almost twice as long as the husband in this situation. I have had little to no help during this time which has forced me to find work from home. I am lucky if I get out of my house for more than a few hours a week and it's been like that for nearly a decade.

    From the very beginning, continuing a sexual relationship with my wife was never even a consideration. It was so far out of the realm of what is ethically right in my opinion. That's not to say we don't and haven't shared any affection. She likes to lay her head on my shoulder while watching TV, hold my hand and she will at times try to kiss me and I have no issues with kissing her back. I give her massages to help with circulation and we sleep in the same bed, often holding each other. I still love my wife very much but moving beyond these basic displays of affection into having sex is crossing a line.

    I can't even be sure she actually understands what we're watching on TV, let alone being able to make a conscious decision to engage in sexual activity. Not having sex is something I have struggled with, as I'm sure any 20 something male would but despite those struggles I've gone 9 years without engaging in any sexual activity. I'm not happy about having celibacy forced on me and it's not something I ever wanted but the situation is what it is. It's a hard decision and in that I empathize with the husband. On one hand he has natural desires and urges and on the other hand he wants to remain faithful to his wife. Just because he is in this dilemma doesn't mean his wife should be forced into it to appease his urges and conscience at the same time. I've often wondered what my wife would want; Me to remain faithful but lacking fulfillment in terms of affection or if she would want me to continue to care for her but find someone to share some affection with. 9 year later I still don't have an answer.

    I am in the camp where I don't believe simply being married gives ownership of one's body to either spouse. I respect my wife as an individual and as such she has the right to say what happens with her body. I once heard a saying that went "If there is ever any doubt, there isn't." The simple fact there is a question here about whether or not she can/ would consent is enough to make doing it unethical.

    If he loves his wife as he says he does, wouldn't he err on the side of caution here? Has he considered that there is at the very least, a small chance she isn't enjoying it? Does he not care what she would think of him for doing it anyway? I know he stated that she shows signs of enjoying it. If her injury precludes her from rational thinking, then it makes sense from a purely physical standpoint, she could enjoy it. Much like a massage. A massage is always going to feel good in terms of physical sensation. That's not to say she is enjoying or would enjoy it mentally / emotionally.

    As to the charges of rape, I do believe this is a bit extreme. However, as the full article stated, he is at the very least negligent for getting her pregnant. While there may be some debate about whether it's unethical, it's clearly irresponsible behavior. I believe a hearing should be had to reassess where she should be cared for. If her family is willing to care for her in their home, serious consideration should be given to this option. If it's between the husband or a nursing home, perhaps she should stay under his care but with restrictions and better supervision.
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    answered Jan 08, 2011 at 12:45PM
    Shane, I am sure that all who have participated so far in this Question on Medpedia would deliver to you their appreciation for telling your own story of your own labor and concerns with regard to your disabled wife. If it wasn't her brain but some other part of her body that sustained severe injury, the dilemma of not knowing what she feels and what she wants would not be present. But unfortunately you don't know. It become purely your decision to determine what is in the best interest of your wife and in a case like this, just as with the husband in the scenario, it was his also. Whether everything he did was justified for his wife and his marriage, we really don't know because, unlike you, he is not here to tell us and we are reading "his story" second hand. So thank you for demonstrating your courage in this personal situation which in some ways could even mirror the courage that you would have to possess, if you could continue your military work and were out on the battlefield. ..Maurice.
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    answered Jan 08, 2011 at 02:31PM
    You are an honorable person, Shane Phillips, and I believe your wife is fortunate to have you. Your sacrifice is not really so, because you could probably do no less, according to your value system. It is a loss to the military that you had to choose between family and career. I lost my career as well, to care for a parent with cancer until the end. My Dad was a Marine Corps veteran, and taught me, that "the injured and even the dead are never left on the battlefield". Whether a brain injury, a cancer battle, or other challenges we face with loved ones, it is our values that drive our commitment to them. Some of us can do no less, despite the sacrifices involved. We may be the only ones left. Thank you for sharing your story.
    I am sorry for your wife being in a severe car accident at such a young age.
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    answered Jan 08, 2011 at 09:56PM
    Maurice,

    Thank you for the kind words. To touch on something you said; "But unfortunately you don't know. It become purely your decision to determine what is in the best interest." I guess from my point of view it's not my decision to make. It's hers and due to the nature of her injury she is unable to decide. Therefore I abstain. When it comes to smaller issues such as dressing her, I do my best to buy clothes not that I would want her to wear but clothes I feel she would have bought for herself. Larger issues such a medical decisions, it's easier in that I chose whatever option posses the best outcome for her well being.

    I just don't see how if a court of law has determined her incapable of making basic decisions regarding her own welfare (something that would of had to happen for guardianship to be granted) how anyone can argue she's aware enough to consent to sexual intercourse. We also can't just put aside the fact that he got her pregnant. Unless he was trying to get her pregnant (which would put into question his judgment) he's clearly acted irresponsible while engaging in sexual intercourse with his disabled wife. Which for me is enough to call into question his decision making process all together.

    Hasn't the wife been though enough and lost enough of her dignity? Wouldn't it be wise in this case to err on the side of the patient here? The fact that there is a chance, however great or small, that she isn't enjoying it...isn't that enough to make a case for abstaining?

    I did say I empathized with the husband but I can't condone his actions based on empathy alone.
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    answered Jan 08, 2011 at 10:31PM
    Shane, of course you would want to follow her decision but you don't know how she would decide at this time because she is unable to adequately communicate her desires. Therefore, as her, husband you have to provide what we call in the ethics decision business "substituted judgment".
    As the surrogate, your decision should be based, not on your own personal desires but on what you know from when you communicated with her during that first year of marriage how she might have decided now if she was able to communicate. Substituted judgment, where you are essentially speaking your understanding of your wife's desires is the best way for a decision to be made beyond your wife speaking now for herself. The other way, if you have no idea from your earlier life with your wife what she have wanted, then your decision should be one of "best interest". What would the average woman who was in the same neurological condition as your wife is now consider would be in her best interest and the best interest of the marriage? To answer that question, it is reasonable to talk it over with others, particularly other women, and see what answer they would give to your dilemma. But as I said "best interest" approach should be used only if you have no recollection of anything that might support a decision now but spoken to you by your wife before the accident. In clinical ethics, medical decision making by others in the case of a patient who cannot communicate desires regarding that medical decision, substituted judgment and best interest approaches are usual ways to decide and only rarely is the courts involved. In your case, it is not a medical decision but one of personal intimacy and I don't see why the same two methods cannot be also applied in your case. ..Maurice.
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    answered Jan 09, 2011 at 10:38AM
    I am a non-medical layperson in this discussion, but I am wondering if it is even appropriate to use the criteria of what a spouse wanted or expressed when her or his brain was not injured, as the criteria for behavior in a post-severe brain injury situation. How can one assume that what was wanted before, is applicable now? The brain is the basis of personality, and even wants and desires. What matters is how a person is, in the post brain injury life. My mother was brain injured as a result of oxygen deprivation after 43 cardiac arrests. My father said a number of times that her personality, and much of what she was in the relationship previous to the trauma, changed so much that the woman he married was not what she became. He had to adapt to the person she became and not assume she had the same wants and desires as before.
    In my opinion, it is actually selfish to carry forth with the notion that it is respectful to honor what the spouse might have wanted in the relationship in the past. He/she is not the same anymore, at least in some ways that will impact the relationship as a whole, usually negatively.
    Having a recollection of something doesn't change the present situation.
    From my female perspective, respect is the most important thing. Which means if the spouse cannot voice their needs and wants in the present circumstance, one cannot know for sure what they are, and it is disrespectful and dishonorable to act on what is now part of history. One is making an assumption that is probably based on one's own needs.
    What about simple affection and caring? Cannot that be enough? Why is physical relations still considered the cornerstone of a spousal relationship? How about friendship and respect!
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    answered Jan 09, 2011 at 12:19PM
    Kim, on re-thinking what I wrote to Shane regarding substituted judgment and "best interests", I worried that this might not apply to the precise dilemma that Shane is facing. So I posted my concerns to a bioethics listserv and see what the ethicists there will have to say. I am beginning to get some responses. I also raised to the listserv two other possible decision-making avenues:

    the decision being based on the husband's conscience (which apparently is what Shane is already doing.) The other would be empiric---observation of the incapacitated wife's response to close, loving behavior and sexual advances on the part of the husband. This empiric approach, based solely on the response of the wife and not the needs of the husband, should provide the information needed to make a final decision. However, there is more to think about.
    For example, a female ethicist on the listserv wrote: "You suggested to the husband you were consulting with to talk it over with others, particularly other women, about what they might want in a similar circumstance. I think there is a flaw in your advice. Many women, indeed most of us who are not-yet-disabled, may relate to this woman as a child, not as a woman. That is, we tend to infantilize people who have suffered intellectual impairment."

    The ethicist had presented a case that she was involved with:

    "a young couple, very charismatic in many ways, who had been together 5-10 years before the wife suffered a tragic neurological event while in graduate school. She had no significant physical impairments but was quite impaired intellectually. Her speech, mobility, etc were intact but her judgment and memory were severely affected. For example, when hospitalized, if not carefully monitored, she would leave the building, go to the parking lot and ask other visitors to help her go home – but could not remember where home was or if she had a home. She would not be able to recall her husband’s name but then recognized him as soon as he was present. She was “child like”. Liked sweets (had become a bit chubby compared to her prior self). Staff felt very protective of her. But when her husband came in after work, this “child” crawled into his lap and was very sexualized. It was uncomfortable for many staff to observe."

    Therefore, in response to my considering an empiric observation of the Shane's wife's responses in a loving and sexual manner and to his sexual advances, the ethicist wrote:

    "What I really liked was your advice to the husband about approaching the question empirically by observing his wife’s reactions. In the case from my prior practice, the wife very clearly was “affectionate” with her husband. And other people! She had high needs for physical touch and affection. Her sexual response had not regressed to that of a 3-year old along with her judgment. She remained a woman. If the husband in my case had refrained from having sex with his wife, who clearly wanted to have sexual interactions, then who do we think she should have sex with? Others with similar intellectual capacity? Or predators? "

    So there you are..so obviously there are other ways of looking at and defining "respect". Maybe
    "respect" requires further investigation and evaluation of what respect means for the person in their current situation. ..Maurice.
    • Each situation is subjective and highly individualistic. Even "respect" is a concept that no one can define for others, I suppose. Thanks
      Kim M Robinson commented Jan 09, 2011 at 03:51PM
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    answered Jan 09, 2011 at 07:54PM
    A male ethicist on the bioethics listserv posted the following. The links provide some details regarding his commentary concerning the value of substituted judgment, "best interest" and parental decision making.

    "Typical benchmarks for consent don't apply precisely in these situations.

    Substituted judgment is fraught with peril. First, the parents and the husband may disagree on what particulars. Secondly, doctors are poor at applying it.
    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0004374

    Adding in the 'best interest' framework also comes up short. A "best respect" criterion was proposed in 1994 by Susan Martyn.
    http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1160003

    There is room in this situation for the concept of decisional authority for those with impaired decisional capacity. Parents have authority to make decisions for their children. This authority can and should be challenged if their decision-making is suspect, but there is great latitude accorded to the parents. Diekema cites this latitude as the Harm Principle in 2004.
    http://www.springerlink.com/content/l01618217887782w/

    Analogously, a spouse, or the adult children of an elderly person with impaired decisional capacity, has been granted this authority, with a similar burden of proof and due process required to override it.

    However, your mileage may vary when using these ethical arguments in court"

    What it may turn out, after all this, is that Shane is left with satisfying his moral conscience or to consider evaluating his wife's response empirically to a test sexual encounter. ..Maurice.
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    answered Jan 10, 2011 at 10:05AM
    I wanted to say thank you to Kim for her earlier post.

    I didn't mean for my situation to overshadow that of the topic, I noticed most of the previous replies were from medical, ethical and other related point of views and wanted to share my own opinion due to how closely the wife's condition seemed to resemble that of my wife.

    I don't struggle with having sexual feelings towards my wife. Being intimate with my wife in her current condition is so far from what my view of right is that it's really a non-issue for me.

    Early on, when those feelings may have still been present, I was to wrapped up in learning to care for her, transitioning out of the Army, etc to even think about it. Over the years my love has changed to something deeper, where physical intimacy isn't required for us to bond. Simple things like her reaching out and holding my hand or her laying her head on my shoulder have become enough. That hard reality though is that I'm not sure she wouldn't reach out to hold anyone's hand if they were sitting next to her and that's what she wanted. There are times where it seems she knows who I am and others where I'm not so sure.

    The question I mentioned struggling with is would she want me to find affection outside of our marriage while continuing to care for her or if she would want me to remain faithful but lacking in terms of any physical affection. My conscience leans towards the latter even if I'm all but positive she would want the former for me.
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    answered Jan 10, 2011 at 10:30AM
    Contributers often bring in examples from thwir own life, certainly I have. That said, it is a balance between preserving one's confidentiality and private domain, and bringing medical ethics dilemmas "alive" in the hope it might inject reality into the education piece. I can somewhat talk about my parents, because they are no longer on this earth, and I was the Power of Attorney and Will Executor for my father. Knowing him, as he was a teacher post military, he would want me to educate others about what cancer is really about, including the end phase. He was a straight talker if there ever was one. Your story helps bring alive the internal and external reality of caregiving someone with a severe brain injury, as well as sharing your family member's particular reality. Caregiving is at once a labor of love and also one of the hardest jobs on this planet, the more so the more disabled the loved one is. I was also a 24 hour a day caregiver at the end.

    I asked my father several times, from a child's perspective, the following questions, and this is what he answered (this was both when he was healthy and in the last years):

    Why did you not leave mother, knowing her condition and how it affected you?
    Because I believed in loyalty until the end, and you don't abandon someone who has never done anything to harm you, who is fundamentally decent, and the mother of your children.

    Why did you not have a relationship with another woman, after mother's brain injury?
    I only married once, and that was for life, for better or for worse. I was loyal to her.

    Why did you and mother not have a physical relationship?
    I didn't want to initiate another heart attack, and there are more important things to me.

    What was the basis of your relationship then?
    Friendship, respect, that she was the most moral person I ever knew, and she was the best mother you children could ever have.

    Why did you not put her in an institution?
    She would have deteriorated further, and it was the home environment that kept her going.

    His favorite phrases were "keep marching", "marine corps rules", and "semper fi".

    Every caregiver has their own reasons for doing what they do, but those were his, in his words, as if he is standing before me today.
    • Re: confidentiality. The questions and answers one writes on Medpedia are potentially viewed by millions, if not billions of readers (unlikely but possible). I have found my answers in the topic list on an Internet search. Even though one signs in, it is not a secure and closed forum.
      Kim M Robinson commented Jan 10, 2011 at 10:58AM
  • 0
    Votes
    answered Jan 10, 2011 at 10:57AM
    Shane, you need not apologize since your situation IS the topic of this Question. In fact, the presenting scenario in this question was only a "made up" story in the Hastings Center Report to stimulate discussion. Your story is real and personal and has opened up new areas for important discussion. In the Hastings story the issue of sexual behaviors of the husband was only looked at in retrospect. The deed was done, many times over, so there was really no ethical dilemma as to whether the similar future behavior of the part of the husband would improve or harm the marriage relationship except if the husband didn't prevent another pregnancy.

    In your case, for which I am sure we all appreciate your personal openness, you have not made the assumption from the onset of your wife's injury that she would have wanted sexual activity but you decided it might be inappropriate, considering her mental capacity, to engage her in that activity. However, I suspect that her current behavior ("her reaching out and holding my hand or her laying her head on my shoulder"), although you don't say it, may have caused you to wonder whether she has some sexual desires which she has not been able to express in other ways.
    Her behavior in this regard, considered carefully as a possible sign of sexual interest, might support my final suggestion towards a decision, beyond substituted judgment, "best interests" or simply your conscience but to attempt an empirical observation to make that important decision. As I previously wrote: "observation of the incapacitated wife's response to close, loving behavior and sexual advances on the part of the husband" might well provide the clue as to what direction you should take with regard to future behavior for the benefit for your wife and benefit for the marriage. ..Maurice.
  • 0
    Votes
    answered Jan 10, 2011 at 02:58PM
    Shane, here another comment and this one is from a male ethicist writing to the bioethics listserv:

    "...might it not
    be just a tad imperial to apply legalistic standards of "best interest" or
    "substituted judgment" to marital intimacies in the absence of any substantial
    reason to believe that the relations are abusive in either intent or
    consequence, or that the woman involved manifests discomfort or unease in some
    fashion?
    Most of the bioethics community was quite willing to support the decision of a
    husband (contrary to the wishes of his wife's loving parents) who had left his
    severely disabled/PVS wife and was living with another woman and eager to move
    on with that relationship to terminate life-extending care of his
    institutionalized wife. Yet some are inclined to scream rape when a loving,
    caring and care-taking husband engages in what may well be pleasurable and
    loving conduct with a woman who, after all, loved and married him, and evidences
    no discomfort or distress? Something seems backward to me here.
    My own inclination is to believe that in the absence of much clearer factual
    evidence that the sexual relationship is distressing to the incapacitated wife,
    the controversy says more about screwed up sexual attitudes in the society
    (including the medical/nursing communities, to the extent that they are
    objecting) than about any abusive conduct toward the wife. Would stroking her in
    a pleasurable (for her) fashion raise the same objections (recognizing that such
    conduct by a stranger would, of course, be in a different category...)?
    I think we could learn much of relevance to this discussion by reflecting on
    changing attitudes toward sexual expression by disabled individuals, another
    situation in which non-familial (and sometimes familial) caretakers may be made
    uncomfortable...
    Invocation of law and high-faluting ethics are not necessarily the proper
    response to every aspect of human experience."

    Shane, as you can see from this commentary (and so far I haven't found any strongly opposite views), the public and the medical care community still has much to learn about the
    disabled and their need and expression for a sexual relationship especially to their competent spouses. Unless they are apparently inert bodies in deep unresponsive coma, these brain injured persons or those with other incapacities may still have hidden sexual desires which may be expressed spontaneously but perhaps in a subtle behavior that can be discovered by others who are attentively observing. Also the disabled should not be looked upon as adults who have become "babies or young children". They should be looked upon as what they are, adults.

    Thus, so far, my research is beginning to further support the
    rationale for an empiric (rather than historical or sociologic) evaluation of what your wife might really want from you as her husband. ..Maurice.
  • 0
    Votes
    answered Jan 10, 2011 at 03:55PM
    Here are some links to literature regarding sexuality and TBI (Traumatic Brain Injury):

    http://issuu.com/bipmagazine/docs/bip22

    http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Traumatic_brain_injury_and_sexual_issues

    http://cat.inist.fr/?aModele=afficheN&cpsidt=2210353

    I checked PubMed, and there are very few formal clinical research studies on TBI and sexuality. My parents were one way, but not necessarily the right way. It is all that I know, however.
  • 1
    Votes
    answered Jan 10, 2011 at 05:20PM
    I may have given the impression my wife is higher functioning than she really is. It's very hard to put into words and when people ask me to describe her level of cognition, I often have a hard time even though I have been by her side nearly every minute of every day for 9 years. I've fought hard, at times even with her family, to treat her as a grown woman. For example, I noticed early on that she liked to have a small washcloth in her mouth to bite. A comfort item so to speak. Her family wanted to get her a pacifier to use instead. I thought that the use of a pacifier was entirely inappropriate for her age and that a simple soft washcloth was much better suited. I find myself constantly reminding people that she's not a child when they are speaking to her. So I appreciate your comments about treating disabled adults like they are, adults.

    I understand the mindset behind the empiric approach and can see the benefit. I just don't get the impression that she is making advances and even if she was, I think it would be to weird for me at this point. I don't know that she even understands what a kiss is or if it's just that she's so used to me giving her one that it's something shes learned post coma.

    She responds to pain and discomfort yet I haven't seen her smile or laugh in over 9 years (pre-accident). She doesn't show signs of sadness either. At best she looks content and sometimes curious (not sexually though. She's never even tried to explore her own body). She doesn't respond to parts of her therapy that would feel good (massage) but does respond to parts that are painful (stretching).

    After 9 years of caring for her and my acceptance of abstinence I just don't see the value of even trying the empiric approach. I don't feel being intimate with my wife in her current condition would strengthen our marriage and actually feel it might put a strain on it due to my own moral beliefs and the subsequent guilt I would feel.

    There is another issue that hasn't been brought up. Most people who are immobile are at high risk for blood clots and all forms of female birth control greatly increase the risk of clots. Male birth control is far from being effective enough to even risk it when pregnancy would pose such a high health risk.
  • 1
    Votes
    answered Jan 10, 2011 at 09:21PM
    Shane, to give you a view from an ethicist probably more in keeping with your concerns, here is what she wrote:

    "I share the worry about applying standards of ''best interest' or 'substituted
    judgment' in such a case. Yet I also find myself hesitating to endorse sexual
    relations in such circumstances, without necessarily having clearly developed
    reasons why. This depends on what we understand the sexual relationship to mean
    and to be, which surely has varied remarkably over time."

    The ethicist was concerned about an issue of '"changing attitudes towards sexual expression" and questioned:whose attitudes ought to be canvassed? The woman
    then, who married the man, or the woman now, who finds pleasure in such physical
    contact? They don't seem to be the same woman in an important sense, which
    raises the question, with whom is the husband having sexual relations? "

    Shane, she was also considered your concern and concluded with "his wife might like to put her head on anyone's shoulder, and that it wasn't necessarily part of the unitive act of marriage. (I don't mean to invoke Catholic doctrine here per se, but that phrase gets at something
    important in such a case - and importantly, it cuts in a variety of ways, depending on how one sees the unitive act of marriage.) "

    As you see, the ethics (if not the laws) pertinent to the original case for this Question as well as your own unexpected burden is complex and there may not be a unified fully agreed upon answer.
    It may turn out that the final answer to your concerns goes back to what you have been dependent upon all these 9 years..you own ethical conscience. ..Maurice.
  • 0
    Votes
    answered Dec 28 at 09:14PM
    No. No. No. There is no ability to give consent to having sex with her husband. The family should receive immediate guardianship as requested.

    But the doctors terminating the pregnancy? This is an entirely different moral issue. Given the sex acts happened and he is technically her husband and she does have previous children with him, it seems to me he would have some say in aborting their baby? No? If this Mom could talk, I doubt she would want to have an abortion and would likely risk her life for her baby.

    It seems to me the termination issue should be a family decision and that the father should have some say in it despite the fact she has not been consenting to the sex. Termination should never be a doctor's decision IMHO. Two wrongs don't make a right.

    What a strange and distributing case.
  • 0
    Votes
    answered Dec 28 at 10:33PM
    The case most likely as published in the Hastings Center Report was fictionalized and was designed for ethical analysis but certainly presents a realistic possible scenario. One issue, the permission for sex which was missing could be argued that with a history of a sexual comparable marriage, would there be any doubt that the wife would deny her husband sex because she was unable to communicate? ..Maurice.
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