Building on your informed consent readings (pp. 120-132), and referring to your ethical theories, what should happen in Case 15? Take a position you don't actually believe in and defend it against your classmates.
the case clearly states that the parents made these physical and hormonal changes to Ashley in order to better her life, not make theirs easier. I do not believe that this is true. Anyone that has taken care of a fully dependent patient can admit that it is taxing both physically and mentally. I do not think it is ethically appropriate to remove breast tissue and provide high levels of hormone in order to limit the amount of weight the caregivers need to lift. what about all of the complications to estrogen therapy? As far as removing her uterus to prevent menstrual pain, lets be honest. It has more to do with the clean up of her menses than the patients pain. I do not believe that this was appropriate medical practice as designed for a surgeon related to gynecology.
This is a hard topic to respond back to because although I wrote different in my response I believe that the parents took some pretty drastic measures and they were designed to make their life easier.
I agree Alex. The parents made the decision to make their lives easier. I don't think the were doing it to make Ashley's life easier at all. They were putting her through the risks of unnecessary surgery and exposing her to large amounts of hormones that is not natural.
Who are we to say that this wasn't in the patients best interest. I understand that having a child like this is hard and it could be taxing as a parent but I mean I feel that they could have been looking at it as they are able to do more with there and try and give her a life of normalcy. Well, as normal as possible. With them being able to take her more places and do more activities with her it gives Ashley a life out of a house or a nursing home where they would have most likely would have had to put her if they were not unable to care for their own child. I see others points though on how it could seem immoral and that his was not in the child's best interest, however, I am sure that the physicians and the parents and all parts of ashley team reviewed all options and seemed that this one was fit. I think that a gynecologist is most fit for this procedure because most OBGYN do do surgical procedures and they are most familiar with our reproductive system. Unfortunately, Ashley was unable to make her own decisions and if these parents felt that this was in their daughters best interest, who are we to judge and say it wasn't. I have a hard time with these things because everyone is so quick to judge others and they are not in their shoes. What if you had this same situation, you don't know what you would do until you are faced with the issues at hand.
I absolutely agree with you, my post was simply from the standpoint of taking a stand on the case in which I did not believe. As an aunt to a niece with Down's Syndrome, it would definitely be easier on my sister if my niece did not have a menstrual cycle. I agree with your stand point completely.
I agree and this is an interesting take. Who are we to say that this wasn't the best option for the patient even if she wasn't able to help make her own decision.
The parents and doctors did this simply to better her life. By doing all of these procedures and putting her on estrogen. It will make her life quality better. Its not out of the benefit of the parent. A parent would never put their child through this much treatment and spend a sizable amount of money just to make their life easier. Every patient or patients parents have the right along with their caregivers to choose a treatment plan even though it may not be a popular one. I believe if it is appropriate medical practice as long as it is discussed and the patient is presented with a number of alternatives.
Your statement that the parents/caregivers may choose a treatment plan even though it may not be a popular one is a great one. In recent news there was a local family whose daughter suffered from multiple seizures and had a poor quality of life. Her parents took a risk and the unpopular treatment plan and moved to Colorado to try marijuana treatment. Even though many people were against it, she has dramatically reduced her seizures and her quality of life has improved. Parents will do just about anything for their children and this was a success story.
The value that guides healthcare decision making when an individual is unable to express a choice is the promotion of well-being. Ashley’s parents were thinking of her well-being when they opted to consent to these procedures. I am sure that their physician was following his moral and ethical obligations to provide the parents with fully informed consent and made sure they understood all of the procedures and the reasoning for them. The poor parents already have to feed, bathe, and change the diapers of their daughter for the rest of her life. By no longer having the possibility of having a period, that is one less worry for the parents. By having a hysterectomy, this saves their daughter should she ever be taken advantage of by some unsavory character that may try to take advantage of her condition. The stunting of her growth will make transporting her much easier and she will have the opportunity to travel anywhere her parents want to take her. Everyone wishes a life of adventure and experiences and Ashley will now be able to have them vs. being placed in a nursing home for the rest of her life. There are four main goals of medicine: The prevention of disease, injury, and promotion and maintenance of heath; the relief of pain and suffering caused by maladies (objective diagnosable conditions calling for medical treatment); the care and cure of those with a malady, and those that cannot be cured; and lastly the avoidance of premature death and the pursuit of a peaceful death (S. Lee, personal communication, September 10, 2007). Ashley’s parents and her physicians all abide by these goals in the hopes of improving her quality of life.
Interesting Jocelyn! I can see how marijuana would work, however I cant imagine giving it to my child. I suppose I would do it for my children if needed, however it would feel very odd.
The parents of Ashley were making these medical decisions in the best interest of Ashley. Keeping Ashley small in stature, making sure she wouldn't go through puberty and have menstrual cycles, would make Ashley's life a little more tolerable. With Ashley remaining at a weight of around eighty pounds, it is easier for her to be bathed, clothed and transported. This will give her more freedom to be taken outside to enjoy nature and to travel easily with her parents. The chance that Ashley would become pregnant is also taken away by having the hysterectomy. Her parents and doctors are doing what they believe is best for Ashley. Maintaining her stature by applying the "Ashley treatment" is part of treating Ashley medically and possibly improving her quality life and/or extending her life.
Case 15 Ashley’s parents and doctors did not do what was in her best interests. They acted unethically and incorrectly according to Ross’ Principles of Biomedical Ethics. They did not respect her and adhere to the principle of autonomy. Ashley should be able to make her own decisions about growing normally. She should not be denied normal womanly functions, and breasts or the ability to grow to a normal size. They violated the principle of beneficence and non-maleficence, as this does not do her any good, it harms her. They have stunted her growth and denied her being a true woman despite her condition. They have projected additional physical disability and illness upon her. They also are now going to take her out in public and parade her around not thinking about how she might feel being an adult who has been forced to remain a little girl forever. This does not adhere to the principle of justice. It is not fair to Ashley that she will be made their little child doll forever and will not be able to go through the normal womanly growth cycles she should.
Brand-Ballard, J., Degrazia, D., Mappes, T. (2011). Biomedical Ethics 7th ed. pg. 402-404. New York, NY. MCGraw Hill.
Shelley, you state a good case, But Ashley's parents were the only ones who could make decisions for their baby who would not emotionally mature beyond a three month old. That being said, she wouldn't be able to choose whether she wanted breasts or not. A three month old doesn't walk, talk or crawl. Lying in a crib, babbling or cooing. Imagine a grown woman doing this, and the parents having to take care of her in this state. This would be hard for the parents, and people are so quick to judge. The level of this type of care may land her in a nursing home, just because her parents would need so much help. I can understand how they would rather be able to take her out and care for her in a more manageable state. (This was an argument against my true beliefs)
Shelley, I thought the same thing about Ashley being their "doll". Part of me was thinking that maybe these parents should have had a mental health assessment to make sure they were mentally stable and making sound decisions. There are syndromes such as muchenausen by proxy syndrome where parents will harm their children, perhaps there is a name for wanting to keep your child a baby forever.
I think that the parents may have acted truly what they think was in her best interest, but the underlying reasons sound so much more about their own convenience. I understand how truly difficult it would be to take care of a adult who is like a baby, but the risks of surgery and high does hormones is a huge thing to consider. Not to mention, the ethics of this situation. It doesn't seem to fall within the confines of a medically ethical treatment.
Unfortunately, convenience has to be considered. They have to take care of here for the rest of their lives and as they age. This way at least they can care for here instead of sending here to a nursing home if they would get injured moving a grown adult. With the mental capacity of a 3 month old, they will have to do everything, from feeding and bathing to changing how many diapers a day.
I'm not so sure that this was a decision made in her best interests. It clearly appears to be to the benefit of the parents. Although they state that it's for her, the reasons cited seem completely about there own convenience. The appropriate moral evaluations of their choice seems obvious, as well as their motivation behind their choice. The President's Commission describes the values of informed consent. Within the commission's survey, the 'absence of objective medical criteria' is an issue that may come into play here. The decision to surgically and chemically prevent maturation is solely one of a personal choice make by the parents. The baby obviously is unable to make decisions for herself, but the right of human dignity should be considered when making decisions for another who cannot speak for themselves. The boundaries of healthcare is guided by the promotion of well being. In this case the well being of Ashley is subjective, and to the parents who believe that this is for her well being, have the part to be the decision makers for her. This medical intervention does not fall within the bounds of appropriate medical practice.
Biomedical Ethics, 7th ed. Thomas Mappes, David DeGrazia, Jeffrey Brand-Ballard, eds.
I’m not crazy about taking a position I don’t actually believe in. I am finding it very challenging to be able to genuinely and passionately argue and write about it. However, I do realize that is the nature of this course and it challenges me to think about all sides of an issue versus only my own personal feelings and opinions which I can appreciate and respect. So, in the case of Ashley and to answer question one, her parent’s and doctors did act in her (Ashley’s) best interests. Her mentality and cognitive state was that of a three month old, the case states that she would never be able to walk, talk, sit up, etc. With the medical interventions, the girl was more conveniently able to be cared for which provided more opportunities for outings and stimulation.
To answer question two…. no it does not seem likely that the motivations of the interventions were for convenience to the caregivers. Ashley’s parents and doctors were trying to improve her quality of life by making it possible for her to experience as much as possible given the circumstances. Had she continued to grow, her parent’s may not have been able to take her outside the home safely to experience other atmospheres – sights, sound, etc. They also spared her the tragedy of possible susceptibility to abuse had she grown breasts and had a uterus.
Medical interventions that arrest a patient’s physical development are not contrary to human dignity. If the interventions are designed and intended to improve one’s quality of life then the advances in technology should be utilized in such a fashion. These interventions do fall within the bounds of appropriate medical practice. We have the knowledge and technological advances available; we should take advantage of those if they are proven to benefit a patient’s quality of life.
Although in this case some unorthodox extremes were taken, I do believe that Ashley's parents were taking action that was in best interest for her and them. They did this to make it easier to care for her, minimize strain, and minimize pain on Ashley's behalf. The utilitarian theory can be used as the maximized utility to increase good and benefiting everyone involved - or maximizing pleasure. By doing these procedures it will maximize the care they can give her and decrease caregiver strain. With informed consent, Ashley is unable to make her own decisions regarding medical care, so as long as Ashley's parents are fully informed and they are not doing procedures with ill intent, the md should proceed with care.
We agree on this topic. We know how hard it is to take care of those adults who cannot provide for themselves. How many coworkers have gotten hurt carrying for these large adults. What is the chance the parents would injure themselves doing it day in and day out.
This is one I had to think about. I think it would be in her best interest for the procedures to be done. She would never understand the changes. It would help the caregiver in helping her. The mental job of taking care of someone with that disability is time consuming and exhausting. We as nurses who take care of quadriplegics would much rather take care of one that is small and not obese. It is easier on the patient and for the caregivers. If the parents are injured taking care of this child who would grow larger, who would step up and help. Or then would she placed in a nursing home to be cared for. Unfortunately it is beneficial to both. She is easier to care for and will be able to be handle like a3 month old likes to be handled. I think it is appropriate intervention if you have the consent of the parents who will have to treat and provide for her until they are gone. You have to consider that they need all the help they will need. Restricting the size would be of great benefit for them. It is a hard decision though when you take over the job of mother nature.
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ReplyDeletethe case clearly states that the parents made these physical and hormonal changes to Ashley in order to better her life, not make theirs easier. I do not believe that this is true. Anyone that has taken care of a fully dependent patient can admit that it is taxing both physically and mentally. I do not think it is ethically appropriate to remove breast tissue and provide high levels of hormone in order to limit the amount of weight the caregivers need to lift. what about all of the complications to estrogen therapy? As far as removing her uterus to prevent menstrual pain, lets be honest. It has more to do with the clean up of her menses than the patients pain. I do not believe that this was appropriate medical practice as designed for a surgeon related to gynecology.
ReplyDeleteThis is a hard topic to respond back to because although I wrote different in my response I believe that the parents took some pretty drastic measures and they were designed to make their life easier.
DeleteI agree Alex. The parents made the decision to make their lives easier. I don't think the were doing it to make Ashley's life easier at all. They were putting her through the risks of unnecessary surgery and exposing her to large amounts of hormones that is not natural.
DeleteI totally agree with you Alex and Tracy. Seem like the risks Ashley is being put through this achieve this is not out weighing benifits to her.
DeleteWho are we to say that this wasn't in the patients best interest. I understand that having a child like this is hard and it could be taxing as a parent but I mean I feel that they could have been looking at it as they are able to do more with there and try and give her a life of normalcy. Well, as normal as possible. With them being able to take her more places and do more activities with her it gives Ashley a life out of a house or a nursing home where they would have most likely would have had to put her if they were not unable to care for their own child. I see others points though on how it could seem immoral and that his was not in the child's best interest, however, I am sure that the physicians and the parents and all parts of ashley team reviewed all options and seemed that this one was fit. I think that a gynecologist is most fit for this procedure because most OBGYN do do surgical procedures and they are most familiar with our reproductive system. Unfortunately, Ashley was unable to make her own decisions and if these parents felt that this was in their daughters best interest, who are we to judge and say it wasn't. I have a hard time with these things because everyone is so quick to judge others and they are not in their shoes. What if you had this same situation, you don't know what you would do until you are faced with the issues at hand.
ReplyDeleteI absolutely agree with you, my post was simply from the standpoint of taking a stand on the case in which I did not believe. As an aunt to a niece with Down's Syndrome, it would definitely be easier on my sister if my niece did not have a menstrual cycle. I agree with your stand point completely.
DeleteI agree and this is an interesting take. Who are we to say that this wasn't the best option for the patient even if she wasn't able to help make her own decision.
DeleteVery well argued points! I feel like unless we are physically in their situation, like you said, who are we to make that conclusion.
DeleteThe parents and doctors did this simply to better her life. By doing all of these procedures and putting her on estrogen. It will make her life quality better. Its not out of the benefit of the parent. A parent would never put their child through this much treatment and spend a sizable amount of money just to make their life easier. Every patient or patients parents have the right along with their caregivers to choose a treatment plan even though it may not be a popular one. I believe if it is appropriate medical practice as long as it is discussed and the patient is presented with a number of alternatives.
ReplyDeleteYour statement that the parents/caregivers may choose a treatment plan even though it may not be a popular one is a great one. In recent news there was a local family whose daughter suffered from multiple seizures and had a poor quality of life. Her parents took a risk and the unpopular treatment plan and moved to Colorado to try marijuana treatment. Even though many people were against it, she has dramatically reduced her seizures and her quality of life has improved. Parents will do just about anything for their children and this was a success story.
DeleteThe value that guides healthcare decision making when an individual is unable to express a choice is the promotion of well-being. Ashley’s parents were thinking of her well-being when they opted to consent to these procedures. I am sure that their physician was following his moral and ethical obligations to provide the parents with fully informed consent and made sure they understood all of the procedures and the reasoning for them. The poor parents already have to feed, bathe, and change the diapers of their daughter for the rest of her life. By no longer having the possibility of having a period, that is one less worry for the parents. By having a hysterectomy, this saves their daughter should she ever be taken advantage of by some unsavory character that may try to take advantage of her condition. The stunting of her growth will make transporting her much easier and she will have the opportunity to travel anywhere her parents want to take her. Everyone wishes a life of adventure and experiences and Ashley will now be able to have them vs. being placed in a nursing home for the rest of her life.
ReplyDeleteThere are four main goals of medicine: The prevention of disease, injury, and promotion and maintenance of heath; the relief of pain and suffering caused by maladies (objective diagnosable conditions calling for medical treatment); the care and cure of those with a malady, and those that cannot be cured; and lastly the avoidance of premature death and the pursuit of a peaceful death (S. Lee, personal communication, September 10, 2007). Ashley’s parents and her physicians all abide by these goals in the hopes of improving her quality of life.
Please remember I am trying to argue against what I believe, so take it easy on me! :)
DeleteInteresting Jocelyn! I can see how marijuana would work, however I cant imagine giving it to my child. I suppose I would do it for my children if needed, however it would feel very odd.
DeleteI know Jocelyn, it's so hard to argue against what you actually believe! You did an excellent job though! Very well argued points!
DeleteMy argument against what I really believe...
ReplyDeleteThe parents of Ashley were making these medical decisions in the best interest of Ashley. Keeping Ashley small in stature, making sure she wouldn't go through puberty and have menstrual cycles, would make Ashley's life a little more tolerable. With Ashley remaining at a weight of around eighty pounds, it is easier for her to be bathed, clothed and transported. This will give her more freedom to be taken outside to enjoy nature and to travel easily with her parents. The chance that Ashley would become pregnant is also taken away by having the hysterectomy. Her parents and doctors are doing what they believe is best for Ashley. Maintaining her stature by applying the "Ashley treatment" is part of treating Ashley medically and possibly improving her quality life and/or extending her life.
Case 15
ReplyDeleteAshley’s parents and doctors did not do what was in her best interests. They acted unethically and incorrectly according to Ross’ Principles of Biomedical Ethics. They did not respect her and adhere to the principle of autonomy. Ashley should be able to make her own decisions about growing normally. She should not be denied normal womanly functions, and breasts or the ability to grow to a normal size. They violated the principle of beneficence and non-maleficence, as this does not do her any good, it harms her. They have stunted her growth and denied her being a true woman despite her condition. They have projected additional physical disability and illness upon her. They also are now going to take her out in public and parade her around not thinking about how she might feel being an adult who has been forced to remain a little girl forever. This does not adhere to the principle of justice. It is not fair to Ashley that she will be made their little child doll forever and will not be able to go through the normal womanly growth cycles she should.
Brand-Ballard, J., Degrazia, D., Mappes, T. (2011). Biomedical Ethics 7th ed. pg. 402-404. New York, NY. MCGraw Hill.
Shelley, you state a good case, But Ashley's parents were the only ones who could make decisions for their baby who would not emotionally mature beyond a three month old. That being said, she wouldn't be able to choose whether she wanted breasts or not. A three month old doesn't walk, talk or crawl. Lying in a crib, babbling or cooing. Imagine a grown woman doing this, and the parents having to take care of her in this state. This would be hard for the parents, and people are so quick to judge. The level of this type of care may land her in a nursing home, just because her parents would need so much help. I can understand how they would rather be able to take her out and care for her in a more manageable state.
Delete(This was an argument against my true beliefs)
Shelley, I thought the same thing about Ashley being their "doll". Part of me was thinking that maybe these parents should have had a mental health assessment to make sure they were mentally stable and making sound decisions. There are syndromes such as muchenausen by proxy syndrome where parents will harm their children, perhaps there is a name for wanting to keep your child a baby forever.
ReplyDeleteI think that the parents may have acted truly what they think was in her best interest, but the underlying reasons sound so much more about their own convenience. I understand how truly difficult it would be to take care of a adult who is like a baby, but the risks of surgery and high does hormones is a huge thing to consider. Not to mention, the ethics of this situation. It doesn't seem to fall within the confines of a medically ethical treatment.
DeleteInteresting takes! I kept thinking the whole time reading the case that this is solely about their convenience. Not sure it's so ethically right...
DeleteUnfortunately, convenience has to be considered. They have to take care of here for the rest of their lives and as they age. This way at least they can care for here instead of sending here to a nursing home if they would get injured moving a grown adult. With the mental capacity of a 3 month old, they will have to do everything, from feeding and bathing to changing how many diapers a day.
DeleteI'm not so sure that this was a decision made in her best interests. It clearly appears to be to the benefit of the parents. Although they state that it's for her, the reasons cited seem completely about there own convenience. The appropriate moral evaluations of their choice seems obvious, as well as their motivation behind their choice. The President's Commission describes the values of informed consent. Within the commission's survey, the 'absence of objective medical criteria' is an issue that may come into play here. The decision to surgically and chemically prevent maturation is solely one of a personal choice make by the parents. The baby obviously is unable to make decisions for herself, but the right of human dignity should be considered when making decisions for another who cannot speak for themselves. The boundaries of healthcare is guided by the promotion of well being. In this case the well being of Ashley is subjective, and to the parents who believe that this is for her well being, have the part to be the decision makers for her. This medical intervention does not fall within the bounds of appropriate medical practice.
ReplyDeleteBiomedical Ethics, 7th ed. Thomas Mappes, David DeGrazia, Jeffrey Brand-Ballard, eds.
I’m not crazy about taking a position I don’t actually believe in. I am finding it very challenging to be able to genuinely and passionately argue and write about it. However, I do realize that is the nature of this course and it challenges me to think about all sides of an issue versus only my own personal feelings and opinions which I can appreciate and respect. So, in the case of Ashley and to answer question one, her parent’s and doctors did act in her (Ashley’s) best interests. Her mentality and cognitive state was that of a three month old, the case states that she would never be able to walk, talk, sit up, etc. With the medical interventions, the girl was more conveniently able to be cared for which provided more opportunities for outings and stimulation.
ReplyDeleteTo answer question two…. no it does not seem likely that the motivations of the interventions were for convenience to the caregivers. Ashley’s parents and doctors were trying to improve her quality of life by making it possible for her to experience as much as possible given the circumstances. Had she continued to grow, her parent’s may not have been able to take her outside the home safely to experience other atmospheres – sights, sound, etc. They also spared her the tragedy of possible susceptibility to abuse had she grown breasts and had a uterus.
Medical interventions that arrest a patient’s physical development are not contrary to human dignity. If the interventions are designed and intended to improve one’s quality of life then the advances in technology should be utilized in such a fashion. These interventions do fall within the bounds of appropriate medical practice. We have the knowledge and technological advances available; we should take advantage of those if they are proven to benefit a patient’s quality of life.
Although in this case some unorthodox extremes were taken, I do believe that Ashley's parents were taking action that was in best interest for her and them. They did this to make it easier to care for her, minimize strain, and minimize pain on Ashley's behalf. The utilitarian theory can be used as the maximized utility to increase good and benefiting everyone involved - or maximizing pleasure. By doing these procedures it will maximize the care they can give her and decrease caregiver strain. With informed consent, Ashley is unable to make her own decisions regarding medical care, so as long as Ashley's parents are fully informed and they are not doing procedures with ill intent, the md should proceed with care.
ReplyDeleteWe agree on this topic. We know how hard it is to take care of those adults who cannot provide for themselves. How many coworkers have gotten hurt carrying for these large adults. What is the chance the parents would injure themselves doing it day in and day out.
DeleteThis is one I had to think about. I think it would be in her best interest for the procedures to be done. She would never understand the changes. It would help the caregiver in helping her. The mental job of taking care of someone with that disability is time consuming and exhausting. We as nurses who take care of quadriplegics would much rather take care of one that is small and not obese. It is easier on the patient and for the caregivers. If the parents are injured taking care of this child who would grow larger, who would step up and help. Or then would she placed in a nursing home to be cared for. Unfortunately it is beneficial to both. She is easier to care for and will be able to be handle like a3 month old likes to be handled. I think it is appropriate intervention if you have the consent of the parents who will have to treat and provide for her until they are gone. You have to consider that they need all the help they will need. Restricting the size would be of great benefit for them. It is a hard decision though when you take over the job of mother nature.
ReplyDeleteI agree Chris...this one was a difficult case to argue for or against.
Delete