If Science is Uncomfortable--DELETE IT!

Read this Associated Press news item written yesterday regarding an action taken by our Bush administration as posted in Forbes.com

WASHINGTON -
The White House severely edited congressional testimony given Tuesday by the director of the Centers for Disease Control and Prevention on the impact of climate change on health, removing specific scientific references to potential health risks, according to two sources familiar with the documents.

I feel that there is a certain guideline in our govenment's behavior regarding science. If it doesn't fit with a particular moral or political end, then delete it. And the government can't even give an excuse that the information deleted was a high national security risk. ..Maurice.

Sexism in Modern Medicine: Advantages, Disadvantages, Cost and Justice

Is there sexism in modern medicine? Many people know there was in the past and many people still think, despite laws and some changing cultural beliefs and some actions, that sexism in medicine persists. To get a full picture of extent of the concerns people have on sexism in modern medicine, I would advise my visitors to first go to the Women’s Studies listserv and read both pages posting the subscribers’ comments. The subscribers are generally professionals and present what I think is a rather balanced, informative and civil discussion of the issues. My visitors should then return to this blog and write their views on this general topic focusing on areas that they think should be changed or improved.

As I moderate this blog thread I will accept discussion of virtually all facets of whether there is sexism in modern medicine except one. That one is sexism as related to patient modesty issues. This topic is currently being well covered in my thread “Patient Modesty: A More Significant issue”. Please don’t write to that topic here but go to the Modesty thread where your comments will be welcomed.

As examples of topics which could be covered, what do you think about the roles and employment of nurses with regard to gender… the gender differences, if any, in preventative medicine or medical research… stereotypical views of the professional behavior of one gender vs the other… and so on? The discussion of sexism on the listserv noted above was in 2000, that’s 7 years ago as I develop this thread. Is there documentation of societal or professional changes since then? Any improvements?

I look forward toward a discussion of the facts and the opinions on this subject of sexism in modern medicine. ..Maurice.

The graphic on this page: I hope everyone recognizes, as public signage, the graphic could represent a public expression of sexism. Has anyone seen such a sign with a woman on it?

Disability Rights Groups: Sacrificing the Individual for the Agenda?

What constitutes an acceptable life to a disabled person? Why is this question important? The answer may provide an understanding and basis for the many very important and also seemingly trivial decisions which must be made by and for that person. The decisions could involve medical procedures and treatments, education, employment, self-care and independence, marriage and parenthood amongst many other issues including the relationship to society and the world around that disabled person. So, who should set the criteria for the individual’s quality of life except the disabled individuals themselves? If the individual cannot communicate because of age, alteration of consciousness or other brain disorder, how should a decision be made about what should be understood as an acceptable quality of life for this individual? Will what is acceptable in one case be identical to what is acceptable in another case? And who should make this decision? Should it be a guardian, other family members, doctors, lawyers or the courts or some consensus of society? One element of society which has an ongoing interest in the treatment and “rights” of the disabled, has researched the issues and who have actively supported and vigorously broadcast their views and conclusions and demands to the rest of society are the disability rights groups. Note that I put the words rights in what are called scare quotes since the meaning is unclear and there is debate, certainly encouraged and supported by these groups, as to what are the rights of the disabled. In view of the close relationship of these groups, whose membership includes the disabled, to the disability issues, should it be up to the disability rights groups to set the standards or criteria that would apply to all disabled persons?


In an article written for the Perspective section of the September-October 2007 Hastings Center Report, Anita J. Tarzian writes about this issue beginning with views of what is meant by the term disabled. She then quotes what Nancy Mairs, a disability rights advocate, wrote in Mairs’ book “Waist-High in the World: A Life Among the Nondisabled”: “People who act on principle are likely to sacrifice the individual for the agenda, which is frequently shaped by their own, often deeply buried, presuppositions about what constitutes an acceptable life.”

So, I put to my visitors the following question: as they explain to us their propositions, should disability rights groups ever sacrifice the disabled individual to the group’s agenda? ..Maurice.

The Patient: How Do I… How Should I know What I Know?

In the not so distant past, yet it was in the past, patients went to the doctor for advice and help and the doctor freely (well, at some fee) provided the patient with both. Those were the days of physician paternalism and patients were not expected to ask much, think or do except to do what the physician advised. Oh my, how times have changed since then. Now it’s patient autonomy. It is the patient that holds the personal decision making power. Physician paternalism in the form of “I know what is best for you and I would advise you to listen and accept what I say” is virtually gone. If anything is left, it is the patient asking the doctor “If you were in my condition, what would you recommend for yourself?” And the physician will think that giving advice from a very personal point of view is inappropriate these days because paternalism is out and doctors shouldn’t talk about themselves or disclose their own personal preferences. So the doctor might respond by saying “What is more important is what you would decide.” Not much is accomplished in that verbal transaction.

As I said, times have changed and now the patient can answer “How do I know what I know” by referring to the directed research on the internet with the power of search engines, reading medical websites and medical blogs such as mine, discussing specific medical issues with visitors to listservs, message boards, chatrooms, and spending a moment reading internet advertisements that seem to pop up here and there but seemingly appearing appropriate to the topic being searched. In addition, the patient easily has access to TV medical dramas and radio, TV and other media “medical news” and as a last resort there is the direct to consumer pharmaceutical company advertising their most valuable drug for a symptom most everyone might have whether it has been diagnosed or not.

What patients also know about their medical problem is what physicians tell them in an attempt to provide some medical education but also informed consent. But an important factor in beneficial and effective doctor-patient communication is the lack of time and perhaps interest by the physicians in a back and forth exchange. Carrying out this exchange will allow the doctor to really understand what the patient doesn’t understand and provide education. It will also allow the patient to understand what the doctor doesn’t understand about the patient’s knowledge and goals and to express them more clearly.

What is important in this era of diminished physician paternalism and heightening of patient autonomy is to promote and accentuate the importance of patients looking to their physicians as a very important resource for their medical education with the physician’s medical expertise. More than just providing medical facts to patients, physicians may have the special skills through training and experience of how to interpret the facts and apply them to the patient’s illness. Patients may not aquire this ability through their outside reading.

Physicians should also look to their patients as folks who most likely are not empty containers of medical information but may very likely be overflowing with good information (and indeed good information about which the physician has not yet read or heard and needs to be educated). But the patient may also have a lot of misinformation too which needs to be corrected and or more realistically applied to the patient’s illness.

So I think the answer to “How should I know what I know?” should be answered by learning through using the patient’s own resources beyond the doctor’s office but also looking toward the patient’s physician as the most knowledgeable resource for the patient’s specific symptoms and disease. Both parties must work together, each bringing their own potentials to provide for the best chance for a successful conclusion of whatever the medical challenge.

For more reading on this topic, you can find the article “How Do Patient’s Know” by Rebecca Kukla in the September-October 2007 issue of The Hastings Center Report. ..Maurice.

Can Torture Ever Be Ethical?

Although our U.S. government insists that no torture is used on their prisoners, there are those who wonder whether torture might even be ethical and necessary. An argument is given by those supporting the limited use of torture that if human lives are at risk and there is a chance that they could be saved by information obtained from some person, then torture methods to get that person to provide the information is appropriate and ethical. There are those who say that torture rarely gets any valid information since those tortured would lie to have the torture stopped.

The Harvard University Gazette in their November 2, 2006 issue describes a talk by University of Texas Law Professor Sanford Levinson made at the John F. Kennedy School of Government on October 26, 2006. In the article "Can Torture Ever Be Ethical?", Alvin Powell describes Levinson's example of such rationalization of torture: In 2004, German police captured a man they believed had kidnapped a young boy. They questioned him for two days, and then, fearing for the child's safety, a senior officer authorized an interrogator to use pain, if necessary, to get information.
After being told what was being planned but before any force was used, the suspect confessed and told police he had killed the boy and where they could find the body.
Though they had gotten the desperately needed information without resorting to violence, both the superior and the interrogator were charged with a crime under the German constitution's absolute ban on torture. Rather than going to jail, however, the two were let off with a fine after the court found "massive mitigating circumstances."

In the war on terror, Levinson said, prevention is how to stop terrorist acts, which means it's key to get information on imminent strikes.
German courts, even faced with a constitutional prohibition, found that in this case, torture was "quasi-acceptable," otherwise the two would have gone to jail.

It appears that society though not accepting torture is more accepting of war since according to
the article Levinson said wars, though violent, are distinguished from torture by having willing participants on both sides. That distinction blurs, however, as war increasingly involves civilians.

Do any of my visitors think that torture has merit and is ethical under certain situations? Would one of the current situations be that which apparently faces the United States and other countries and that is the "war on terrorism"? ..Maurice.

Finding and Reporting Torture: A Doctor's Duty

Here is the press release yesterday by the World Medical Association regarding what they have agreed should be the role of physicians with regard to finding and reporting evidences of torture. What do you think about their guideline? To learn about the history of the World Medical Association click here. ..Maurice.
Note: Photograph, classic Abu Ghraib prison photo.


Doctors Urged to Document Cases of Torture

New guidance to doctors to become much more actively involved in documenting cases of torture they come across, have been approved by the World Medical Association. At its annual General Assembly in Copenhagen which ended at the weekend, the WMA decided that physicians had an obligation to document cases of torture in a professional way when examining victims of torture and consulting their medical files. Based on the guidance given in the Istanbul Protocol for medical and legal experts on how to determine whether or not a person has been tortured, this documentation could then be used for submission to judicial and administrative bodies.

Amending its advice issued four years ago, the WMA said that the absence of documenting and denouncing such acts might be considered as a form of tolerance and of non-assistance to the victims.

Dr Jon Snaedal, President of the WMA, said: 'Doctors are in a key position to witness and report acts of torture, and by documenting and providing information about what they see, they can become a powerful voice in helping the struggle against torture.

'This is the first time the WMA has explicitly obliged doctors to document cases of torture of which they become aware. By doing so we hope that doctors around the world will put pressure on those who perpetrate such acts to stop such degrading treatment'.

Brita Sydhoff, Secretary General of the International Rehabilitation Council for Torture Victims, told the meeting: 'Doctors, with their specific expertise and direct access to victims, play a crucial role in establishing the evidence needed to prove that torture has occurred. Many practitioners are unaware of how to recognise symptoms of torture - and of their responsibility to report their findings. A particular challenge in documenting torture is that torture methods are often designed to induce maximum impact while leaving minimum detectable signs.

'Add to this that victims are often detained until their physical injuries have healed, and it becomes clear that documenting consequences of torture is no easy task.

'I have no doubt that the proposed changes to the WMA guidance today will help strengthen the fight against impunity for perpetrators of torture. By adopting these changes, the WMA will significantly bolster the crucial role
that medical doctors can play in the fight against torture.'

The amended guidance urges national medical associations to promote the training of physicians on the identification of different modes of torture and in recognising the physical and psychological symptoms following specific forms of torture. However physicians should observe informed consent and avoided putting individuals in danger while documenting signs of torture and ill-treatment.

The WMA's guidance is in line with the Istanbul Protocol which states: 'In some cases, two ethical obligations are in conflict. International codes and ethical principles require the reporting of information concerning torture or maltreatment to a responsible body. In some jurisdictions, this is also a legal requirement. In some cases, however, patients may refuse to give consent to being examined for such purposes or to having the information gained from examination disclosed to others. They may be fearful of the risks of reprisals for themselves or their families. In such situations, health professionals have dual responsibilities: to the patient and to society at large, which has an interest in ensuring that justice is done and perpetrators of abuse are brought to justice. The fundamental principle of avoiding harm must feature prominently in consideration of such dilemmas.
Health professionals should seek solutions that promote justice without breaking the individual's right to confidentiality. Advice should be sought from reliable agencies; in some cases this may be the national medical association or non-governmental agencies. Alternatively, with supportive encouragement, some reluctant patients may agree to disclosure within agreed parameters.'

A Problem of Informing a Juvenile

Here is another thread I have migrated to my blog from my now inactive "Bioethics Discussion Pages". The issue is presented first and then the visitor responses from 1996 to 2004 are listed with the oldest at the bottom of the page. I welcome any comments from my current visitors on this not uncommon problem facing physicians as they make serious diagnoses on youngsters. ..Maurice.


The case is that of a 10 year old girl of average maturity for her age who lives with her mother, her father having died of cancer 4 years earlier. Because of a number of symptoms including joint pains over the past 6 months, she was examined by her physician and found to have lupus erythematosis, a generalized disease of the tissues of the body which can affect various organs of the body and can be fatal though there is treatment to keep the patient comfortable and extend their life. The patient was in addition found to have chronic kidney disease due to the lupus. Treatment with immunosuppressive drugs would be expected to cause some unpleasant symptoms while receiving the drugs but also hopefully would improve her kidney condition and her lupus though, even with treatment, she might not even live out a normal life.

The mother was first told by the physician about the diagnosis, treatment and prognosis. She told him emphatically that she did not want him or anyone else to tell her daughter about all this. She refused to allow her to be treated with the drugs. She said when her husband learned about his cancer he was very depressed. The chemotherapy left him very sick and despite treatment he died from his cancer. She didn't want her daughter to go through the same ordeals. She wanted her daughter to know that her illness was minor and that she would "outgrow it".

At this point, what should the physician tell the mother and what should the physician say to the patient? What should the doctor do? Who is the doctor's patient and to whom is he responsible? How much should a 10 year child of average maturity be aware of their illness and participate in the decision about their treatment?

THE DISCUSSIONS

Date: Fri, Jan 23, 2004 10:43 AM From: michelleblackwelder@knology.net To: DoktorMo@aol.com
I don't know how many of us have really sat down and talked to a 10 year old lately. It seems we give them little credit. It will be devestating for the 10 year old to find out about the disease, as it would be to a 30 year old or a 50 year old. But children are braver than adults, they are also more optimistic. Give her a chance to live her life in the way she chooses. She can not make the decision alone, but can definately play a major role in making informed decisions. Both the daughter and the mother need counseling. The mother needs to heel from the death of the husband, something she has not had time to do and the daughter needs someone she can openly share her feelings and worries to seeing as how her mother is not ready to help her with this.

Michelle Blackwelder


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Date: Sun, Mar 30, 2003 7:48 AM From: peekingfishy@hotmail.com To: DoktorMo@aol.com
I believe that the child should be given all the available information about her disease, the side effects of the drugs, and outcomes Allow her to make this decision on her on. If need be, let her research her disease and this should let her feel more comfortable with her decision Her mother should be supportive throughout the whole ordeal, and not interfere in any way with her child's decision.


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Date: Tue, Nov 12, 2002 5:59 AM From: student@chesterfield.k12.va.us To: DoktorMo@aol.com
The child should know the name of the disease, so that if they so choose they may research it for themselves. Second, the child should be informed of the symptoms. perhaps not all, but at least the ones they will notice themselves. the mother should be informed of the damage that could be sustained if no treatment is given. Certainly the child will suffer just as much without the tratment as she would with it. In regars to whom the doctor is responsible, i would say they patient. the mother is not the one with the disease, nor is she the one who must undergo the treatment. it's obvious she means well, however, sometimes meaning well and actually helping can be two different things.


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Date: Sat, Apr 6, 2002 10:05 AM From: audrey.pulsifer@andersen.af.mil To: DoktorMo@aol.com
I absolutely believe the right thing for the doctor to do in this situation would be to advise the patient of her illness. No matter what the mothers position, I believe that the doctors loyalties should lie with his patient. The mother wanting to withold this information is understandable, yet undeniably selfish, in my opinion. Children often have a much better capacity to understand and deal with death and disease, than most adults do. They are unbiased to all the overlying factors and see things in a pure and unselfish fashion. Often times it is the children who teach us how to cope with these life tragedies, and we should give them every right we would expect.

SrA Audrey R Hildreth-Pulsifer 734th AMS TRK 366-2800 Andersen AFB, Guam

"The eyes of a child hold all the answers..."


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Date: Fri, Mar 23, 2001 1:35 PM From: claire_148@hotmail.com To: DoktorMo@aol.com
Dear All

I think that ultimately the mother's understanding of her child and how she may react to her diagnosis and prognosis must be respected. However, it would be important for the doctor to explore this decision further with the mother. It would be important to discuss why the mother feels that her daughter would go through the same ordeals as her father. They are afterall two different people in two different circumstances. Why does she think that her daughter would not cope with this information. She may like to discuss how her experience of her husband's death is influencing her attitude to informing her child. I think the mother may also wish to consider , if not now, when would she think was a good time to fill her daughter in. Would it be at 12...or maybe 16? Why then, not now? She could also consider what exactly she will tell her daughter. Does she need to lie about this to protect her daughter. Maybe she could introduce the implications of the illness slowly and in line with the childs maturity. She might like to put herself in the daughter's position and think about how she would feel if her mother had misled her .

In the end, i think that as long as she has given due consideration to the possible pros and cons of her decision and is going to allow the doctor to manage the illness and not expect him/her to blatently deceive the daughter then, her parental right must be respected. I mean she knows her daughter better than anyone. I think however, that as soon as the daughter reaches 16 ( Australian age of consent), that the doctor must then use his own judgement and experience of the daughter to make his decision about telling her what is going on.

Thankyou for a great forum for discussion

Claire Groombridge, NSW, Australia


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Date: Sun, Jun 4, 2000 4:30 PM From: mitchell.bee@worldnet.att.net To: DoktorMo@aol.com
I am a sixteen year old male who has little background in bioethics, but I have a very strong opinion on this. The girl has a right to know. With all of the mothers worries aside, somebody needs to know why the pain isn't going away and why things just don't seem right. Without treatment, the girl will die much sooner. The quality of life may decrease during treatment, but it is for the better in the end. As a male of average maturity, I know the news would make me depressed for some time, but in the end I would have wanted to know. It is possible for this girl to live a full life with treatment, and that should be the only focus of the mother and the doctor.

Dean Mitchell, Redmond, Washington


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Date: Mon, Apr 19, 1999 8:41 AM From: LIbInternet@habs.herts.sch.uk To: DoktorMo@aol.com
I am only 16 and I do not know much about bioethics, so my view may come across as fairly naive. However it seems, that although the mother is trying to protect her child for a good reason, she may in turn be preventing the child from living a better life. She cannot be sure that her child will respond to the knowledge of her illness in the same way as her past husband or that her child will die from her disorder. However, the child is still fairly young and I am not positive that it would be best for the doctor to ignore the wishes of the mother as it would lead to unnecessary tension between all the parties and distress the mother further in an already difficult and emotional situation. To me, it seems that the doctor should talk to the mother further and indicate that the situation is distinct from that of her husbands. The benefits of the treatment need to be reiterated and perphaps a suggestion raised that the mother needs to inform her child of the situation. It is not the doctors place to tell the child but the mother needs to realise that the child may actually feel more depressed if she is not prepared for a possible death and is not aware of what is happening to her in terms of treatment and pain. A child of ten would also not have the same perception of the situation as the adult parent, even though her father has died and it is likely that she would not become as depressed as someone older. It is a difficult situation and I think that in the long run the mother's word should stand, as the child is not old enough to recieve this information and make such decisions without parental support and guidance, which would involve the full commitment of her mother.

Yours, Alice Goldhill, Haberdashers' Askes, School for girls, Elstree, England.


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Date: Thu, Nov 26, 1998 7:26 PM From: Oreo3737@aol.com To: DoktorMo@aol.com
I believe that the patient should be told of her illness. The physician should tell the mother that if her daughter is allowed the treatments, then she will have a better chance of survival. The treatments may have many side effects that the mother does not want her daughter to go through, but if she does not have these necessary treatments she will die. The doctor cannot tell the patient how life-threatning her illness is without the mother's consent. The mother should allow her daughter to know and let her decide. The treatments may cause her daughter to be sick, but without the treatments she will be just as sick. It is not fair to the child to have no choice. The child has a chance of survival with the treatments, without them there is not any chance. The mother should let the doctors do whatever is necessary for the survival of her daughter. If the mother really loved her daughter, then she would do whatever it took to keep her alive. No one could have prevented her illness, but they can prevent her death.


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Date: Tue, Sep 22, 1998 4:12 PM From: yankowy@gateway.net To: DoktorMo@aol.com
I think that the ten year old should definately be told about her disease and the seriousness of it. I myself have a disease which my be connected to lupus. My doctors are currently testing me for lupus. I am still a teenager but I would expect my doctor to tell me the truth not just what he thought I might want to hear. I would also hope that my parents would tell me. I would like to be able to make my own choices when it comes to my illness. I most certainly feel that the doctor has a responsiblity to tell the child.


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Date: Sun, Sep 6, 1998 3:18 PM From: gwen.sayers@which.net To: DoktorMo@aol.com
The mother should be aware that her daughter does not have an immediately terminal illness, nor one which will definitely result in death. The child is the patient and it is to the child that the doctor is responsible. Children have varying degrees of capacity at the age of 10 and the doctor should explain as much as the child can comprehend about her illness. This would include information about the proposed treatment and the expected benifit. The child may be able to consent to treatment. The mother does not have the right to refuse life saving treatment for her child.


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Date: Fri, Aug 14, 1998 3:22 PM From: v.mansueto@virgin.net To: DoktorMo@aol.com
The fundamental principles involved are 1.Parental rights in being the representative of a minor offspring. 2.Parental responsibility and duty of care of the offspring.3.The aspect of human rights which stipulates that the child has a right to expect proper medical care. 4. The doctor patient relationship. 1. The parental right has to be recognised. It is not possible to treat the child without the mother's consent. Even if it were possible in law the fact that the mother's cooperation is needed demands that her consent is won over by sympathetic discussion and sound reasoning 2. The mother's reaction is understandable, and the doctor should let her know that he understands how she feels.She went through the ordeal of looking after a terminally ill loved one observed his physical and mental anguish and finally losing him. At the same time the doctor should highlight the fundamental differences between the conditions of the husband and of the daughter. The husband had a much deeper understanding of the end result of his illness. The child is not so perceptive. The husband was getting progressively worse in spite of treatment which caused him distressing side effects. He could see the inevitable outcome of his condition.This scenario must have contributed significantly to his depression. The child in spite of perhaps equally distressing side effects should expereince less pain and physical distress. Her improving general condition should help her to take more active interest in life, and instead of becoming depressed,on the contrary she is expected to be happier. 3. The child has a right to proper treatment.The treatment for her condition although it is not going to achieve a permanent cure is expected to provide relief from pain, improve her general health and prolong her life. These positive aspects of the treatment should be emphasised both to the mother and to the child. The child's confidence should be gained by informing her of the significance of her condition, the aspects of the treatment and the options and answering her questions honestly taking into account her level of intelligence. It may be useful to have an experienced counsellor talking to her. The mother's suggestion that the child should be led to believe that she will outgrow her condition is a measure of the extent to which she is prpared to go to overprotect the child. However the doctor will only collude with this plan at his peril. 4. The patient is of course the child not the mother and however sympathetic to mother the doctr is, the doctor should not lose sight of the fact that in the end in this situation the ultimate responsibility is for the child's welfare.


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Date: Wed, Jul 29, 1998 9:43 AM From: SBERKOWI@AspenMed.org To: DoktorMo@aol.com
Two principles that I always try to follow as a Pediatrician and in my work with bioethics are to act in the best interests of the child and that good ethical choices come from good medical information. If the only thing this mother is hearing is that Lupus can be fatal, then her physician has failed her. As other respondents have stated, although SLE (Lupus) can be fatal, it is primarily a chronic disease with potentially many complications, but can be controlled with various medications. Clearly the child is aware that she is ill, but to assume as one respondent did, that she will be able to figure it out is unlikely. SLE is neither common, nor easy to diagnose. I would agree that the major stumbling block here may be the mother's inability to deal with this illness after her husband's death, but the child can neither be allowed to go untreated, nor to have her diagnosis kept from her. Her involvement in her care will be necessary, and to hide the diagnosis will prevent this. Finally, while it will be important to work with the mother to deal with her issues and get her to cooperate with treatment, treatment should not be delayed while this takes place, expecially if the child already has evidence of kidney disease.


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Date: Wed, Mar 18, 1998 4:03 PM From: wprobbin@ehc.edu To: DoktorMo@aol.com
I believe that the ten year old should be notified of her sickness. However, I think that the mother and the doctor should go about it in a way that the ten year old doesn't know how bad the sickness is. By law the doctor can't tell the ten year old without the mothers consent, but it is his duty to do everything possible to make the mother allow treatment.

Wes Robbins, Emory & Henry College, 540-944-6465, wprobbin@emory-henry.emory.va.us


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Date: Fri, Feb 13, 1998 11:55 PM From: jamesmcrae@worldnet.att.net To: DoktorMo@aol.com
At this stage of the 10-year old's life, she needs her mother's support and guidance to help her cope with this crisis. Understandably, the mother can't help but emotionally remember the agoninzing death of her husband at an earlier date. Thus, she is in a protective stage of denial to protect and shield herself from the impending loss of her daughter just as she lost her husband. With this in mind, both mother and daughter should be advisedby either a hospital chaplain trained in medical bioethics or an Christian/biblical counselor with a similar background. Such a bioethical counselor could encourage the mother to paticipate in her daughter's treatment and help her daughter to understand what is going on inside her body so that she won't be unduly frighten when these episodes occur. And a friendship with a similarly-afflicted juvenile might give the litte girl even more courage and resources to face the rough road ahead. This approach, if successful, would obviate the necessity of dragging the mother and daughter through unnecessay and emotionally-exhausting legal proceedings brought against the mother by hospita attorneys. At the risk of sounding redundant, both the mother and her daughter should be "on the same team" in order for the juvenile to more effectively handle the coming crisis that lies ahead. And, of course, lots of prayers for both the mother and daughter in this situation would help both of them.

Jim Ray (a volunteer hospital chalain)


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Date: Sun, Jan 11, 1998 5:01 PM From: greg_burrill@loyolanet.campus.mci.net To: DoktorMo@aol.com
I find it interesting that none of the opinions posted speak to the necessity of treating the mother's objections as more than an obstacle to her daughter's treatment. It seems to me that the mother can and will be made to understand the need for treatment of her daughter's condition. If the mother has a relationship with a church or if the aid of other family members can be enlisted to help in this process, perhaps the outcome will be favorable for both mother and daughter.

On the other hand, although turning this into a circus of bureaucrats and lawyers may result in the doctor feeling safe from legal repercussions, I would consider a decision like this to be unethical if the agencies are inefficient or if the outcome is likely to be the estrangement of the child from the mother.

If I am correct, the real bioethical dilemma is that the doctor cannot spare the time and resources necessary to treat the mother, or that integrated systems are not in place to keep the problem from becoming legal rather than medical.


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Date: Tue, Nov 11 1997 7:56 AM From: cgouthro@prodigy.net To: DoktorMo@aol.com
You said that the ten year old daughter is very mature for her age, correct. Well, if she knows that she is sick, then she should be able to find out what is wrong with her. The mother is denying her own daughter her right of treatment, which could be deadly. I don't think that the mother should have a say in the matter, it's not her life, she's not the one who is sick. I can see where it would be hard for the mother to except that her daughter is going to die like her husband, but by refusing the medication is just speeding up her own daughter's dying process.


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Date: Fri, Sep 5, 1997 4:02 AM From: derek@nypc.com (Derek Xanders) To: DoktorMo@aol.com
In response I have to say that if the mother of the child wishes not to tell her then that is the mother's choice. The child has not reached the age of adulthood, and the mother is the specific guardian of the child. Let the mother keep it a secret, so the child can go on living the rest of her short life, without fear, and without depression that the father experienced earlier in the child's life. That is my opinion on the subject.


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Date: Wed, Jul 16, 1997 2:21 AM From: Nrse4morph@aol.com To: DoktorMo@aol.com
I also agree with the rest of your respondents. The mother is wrong. Her actions are based on her own fears, and the negative experience she had with her spouse. This however is not an acceptable rationale for denying care to her daughter


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Date: Mon, Jun 30, 1997 12:48 PM From: beverly-bowers@ouhsc.edu (beverly bowers) To: DoktorMo@aol.com
A 10 year old child is very adept at picking up information. She probably already knows that something is not right. As the physician I would strongly encourage the mother to let her child know about her illness. Remind the mother that children look at illness differently than adults and are usually more matter of fact. Since lupus is a chronic illness, she has to start learning how to deal with it now. Also she will have more trust in her mother is she is truthful. Although the child is the patient , in Pediatrics, the parents wishes are also to be considered. Hopefully, the mother will let the physician share some information with the child.


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Date: Wed, Feb 12, 1997 4:11 PM From: netscape@usca.usca.sc.edu To: DoktorMo@aol.com
The issue is the mother's inability to cope with the news that her child has a serious illness. The mother has a lack of education regarding her daughter's diagnosis even though the physician told her everything. The mother did not hear everything. We see this frequently in health care, denial is a strong force and is this mother's coping mechanism. The child should not be penalized for the mother's inability to make an educated decision. It is up to healthcare provider to see that the child's interests are protected. At this point social services should be notified as well as the hospital attorney.

Diana Rovira, RN USCA


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Date: Tue, Nov 26, 1996 9:01 PM EDT From: Tmandahl@aol.com To: DoktorMo@aol.com
The act of the parent in bringing the child was enough of a choice by both parent and child to give the physician a responsibility of care to the patient. It is implied consent by the parent for the physician to extend care, with all of its attendant circumstances, to the patient. Virtually all medical ethics from the Hippocratic Corpus and Galen to the present would say that the physician has responsibility to the patient. It is, remember, a doctor/patient relationship and the parent is but an intermediary. This does not, however, obfiscate the parental control over the child. The parent(s) must be brought into the equation whether they agree with the physician or not.


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Date: Tue, Oct 8, 1996 8:05 PM EDT From: MGJM@aol.com To: DoktorMo@aol.com
The Doctor's duty is to the 10 year-old. While it is true that she is a minor, SHE, not mom is the patient. Patients have a right to be treated with dignity and respect. The patient should be told as much as possible. Lying is hardly justiified, and situational ethics are usually little more than an assuagement of guilt. Tell the little girl; someone ought to respect her, even if her mother does not.

MGMoncman, DO Neurosurgeon


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Date: Tue, Sep 17, 1996 1:32 AM EDT From: devilbaby@earthlink.net To: DoktorMo@aol.com
Tom Koch's opinion was superb. I do have a couple of things to add though. A social worker's patient would more likely include the family as a unit, especially in this cases because there are psycho-social issues that are complicating the health of the child.

I suspect that this case could end up with child protective services due to the child's life being endangered by the mother's refusal of standard medical care for her child who with care could live a normal life span. Think of the people who have been prosecuted in the death of their children due to religious faith issues. As far as what to tell the child, she may know more or less than she is indicating. Ask her what she believes about her illness which may open up all kinds of doors in to how to intervene with this family.

I cannot get away from the apparent irrational, though understandable, basis for this woman's refusals. She is not acting as an adult in charge of the facts, but as a traumatized person who is unable to deal with this issue rationally at present. All the more reason for others to intervene on the child's and mother's behalf. This mother will have a hard time dealing with the unnecessary death of her daughter at a later date.

Robyn LCSW


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Date: Sat, Aug 17, 1996 11:51 AM EDT From: 71600.1123@CompuServe.COM DoktorMo@aol.com
The key to this problem--I'm not sure I'd call it a 'dilemma' is the mother's insistence that she doesn't want her daughter to go through the same ordeals as the father, who had adverse reactions to chemotherapy treatments for cancer. She says she wants her daughter to know that her illness is minor and that she will 'outgrow it.'

The mother is reacting to her memories of a spouse's treatment and eventual death from cancer. Afraid, she is denying the seriousness of the daughter's condition because those memories are painful.

As a result, and without treatment, the ten year old's condition will almost surely worsen.

The central fact is that the child's condition is not minor and will not be "outgrown." She needs treatment. If the mother can not be made to understand this by the pediatrician, he may ask for a psychological or social work consult. A pastoral counselor may be useful if the mother is religious. If there is a trusted family member also involved (a grandparent, an aunt, etc.), the mother might be asked to bring that person into the conversation. Finally, if there is a good family physician, he or she would be the ideal mediator between the mother and her denial, and the pediatrician involved in this case.

What appears to be about autonomy in pediatrics is, here, about a parent's inability to accept the serious illness of a child following the death of her spouse. Accepting that denial in the name of autonomy may seriously and adversely affect the pre-adolescent patient. If the mother refuses to accept any mediation, or any advice, the physican may then wish to speak to hospital supervisors and staff about steps which, in some jurisdictions, would allow more advanced treatment.

Tom Koch

Are Ethicists Always Ethical?

"Are ethicists always ethical?" To be able to try to answer that question, one must first know who is an ethicist, how did they become an ethicist, what are their responsibilities and to whom, what are their common guidelines for behavior and for practice as an ethicist and finally are they as persons containing some personal quality which is different than the rest of us? My questions were more specifically spelled out recently by an ethicist on a bioethics listserv on this issue.


We do not know who counts as an ethicist, bioethicist, clinical ethicist in the absence of any indices of professionalization (professional training, certification, accreditation).

We do not know what do not know what counts as good moral advice in the absence of best practices guidelines, consensus statements, etc.

We do not know what counts as unethical practice for an ethicist, bioethicist, clinical ethicist in the absence of best practices guides or, better yet, a code of conduct for bioethicists.

One must also distinguish in the question "are ethicists always ethical" between their behavior at work and their behavior in their private lives. At work, I can see of possibilities where an ethicist employed by a company may because of conflict of interest direct their decisions in favor of the company rather than assume an unbiased position in their conclusions. The private lives of ethicists hold much room for cheating a bit on what is accepted as ethical behavior because of their assumpion that this is necessary either to preserve or enhance their personal or family life.

On the whole, I think that some ethicists don't follow their own "professional" prescriptions in the same way some physicians fail to follow their prescriptions which they give regularly to their patients. I would be interested to read from my visitors any experiences they have had with ethicists or ethics committees. Also what is your view on the question in the title of this thread. ..Maurice.

ADDENDUM 10-10-2007: A professional ethicist recently wrote me this commentary on the subject and I thought it would be appropriate to add it to the front page of this thread. ..Maurice.


RESPONSE TO ‘ARE ETHICISTS ALWAYS ETHICAL?


Anonymous - Professional Ethicist

The whole enterprise of ethics is about discerning right and wrong, good and bad. However, there is not a consensus on what Right and Wrong/Good and Bad are. There are different theories of the Good. Plato for example said that The Good is an Idea, and good things are good because they reflect this Idea. Philosophers can see The Good and explain it to all others; Aristotle said that this theory produced more problems than it resolved. Later, Mill and other Utilitarians argued that actions are right when they produce the greatest happiness for the greatest number (whether this generality has to include only people, or other animals, or future generations, is open to debate). This theory dissatisfies others, who insist on the character of the agent, rather than on the consequences of individual actions it sounds paradoxical to say that an action is good, even if it is performed for evil or purely selfish reasons, just because it produces happiness to a great number of people. Likewise, it seems paradoxical to say that an action is morally bad if it causes unhappiness, but it was not in the agent's intention to harm others. Intentions, therefore, some claim, are what matters. But others respond: intentions are not measurable and verifiable – even the agent himself, often has not a clear view of his real intentions…

This illustrates that there is not a clear and accepted paradigm of what should count as good, right or ethical.

In absence of a clear paradigm of goodness, not having a code of conduct on the basis of which the life of an ethicist should be regulated has its advantages. This code, in fact, could contain values that are not shared by all, and could limit the legitimate expression of individual autonomy. One of the greatest achievements of contemporary ethics has been to assign high value to autonomy. People's right to shape their lives according to their own values is now secured by all conventions and declarations of human rights and fundamental freedoms. It would be self-contradictory to judge the adequacy of an ethicist according to set-up guidelines.

However, the blog raises an important issue about the relationship between private and public life in our profession. I will argue that in ethics the demarcation line between private and public dimension is not as thick as it can be in other professions (like arts), and that our private behaviour should be consistent with our public role. This does not mean that we should give up our personal freedom and privacy, and accept to be judged on the basis of a code of conduct. It means that extreme behaviours that cross the line of legality and that clearly contradict the message we want to convey in our public capacities should be avoided.

Before I explain my point of view, I should clarify who we, ethicists, are and what we do. Ethics is a philosophical discipline, so, stricto sensu, an ethicist is by background a philosopher. However, given that science and medicine are multidisciplinary areas, that involve psychology, medical sciences, sociology, law and economics, some ethicists might have a different background. This is not inconsistent with our job.

Ethicists are professionals in charge of clarifying what courses of actions are preferable. We work in a variety of contexts. For example, we might be involved in illustrating the ethical issues raised by scientific advances; some of us take part in ethics committees within hospitals. We help clarifying whether for example financial resources should be allocated to one service or another; the modalities in which consent should be gathered; the modalities in which people should be respected, even when they wish to die. We, generally within a team, often take a role of guidance in difficult clinical decisions. We also contribute to shape public policy we are called to assist in the development of guidelines on a variety of issues (genetic engineering; doping in sports; treatment of mental disorders etc.). Our work thus has significant impact on public policy and law. We are also often employed by universities; we are involved in education, another great responsibility towards the public.

In other professions that have marked public resonance, the private life of professionals is open to social/public scrutiny. Politics is a clear example of this. Let me illustrate this point with a coupld of example: In 2004, the UK Home Secretary David Blunkett resigned because he was found to facilitate the VISA of an immigrant who worked for him. He lost his credibility not just because he abused of his powers, but also because somebody who is supposed to protect public justice should not commit an injustice, however well motivated this might be.

A more grotesque story happened in Italy early in 2007. A Member of Parliament, Mr Selva, called an ambulance to deceive the traffic in Rome. He had been invited to a TV Studio for a political debate. On his way to the Studio, his car was stuck in the city centre, where the traffic had been blocked due to the arrival of the US President G.W. Bush. As the police refused to let him go through the barriers, he decided to call an ambulance and fake sickness, to be taken to the Studio. It was Mr Selva himself to tell this story publicly, during the TV programme, smiling that his was a smart move. After this episode, investigated by the Italian Magistrates, Selva resigned.

In both cases the story has not only the private dimension of a wrongdoing (the person has violated the law and is personally accountable for this); the wrongdoing also says something about the agent's adequacy to carry out properly his public role. His private actions erode his credibility as representative of public interests.

Ethics and politics have traditionally been considered twin philosophical disciplines, and the profession of an ethicist is in many relevant respects similar to the profession of a politician. They both act in the public sphere, what they say often has public impact, and they should both protect or promote certain conceptions of the good. There is however a discrepancy between treatment of politicians and of ethicists, in spite of the similar public role we cover. Before this incongruence, we need to reflect more.

Let me narrate a personal story, which raises important ethical issues about the relationship between bios, lives, and ethics. A few years ago, I got engaged with an eminent professor of ethics and director of a centre of bioethics. Before we got married, we decided to have a child. When I was about 20 week pregnant, he broke our engagement and told me over the phone he was going to live with his ex. He said that if I was going to carry the child to term, I should do so in the awareness that the child would be fatherless. He left me and my child with no house, in a foreign country and without assistance.

In addition to this, my ex partner was sending me hundreds of messages: most were love and sexual, some openly obscene, some abusive and threatening. I visited the Domestic Violence Police Department. They asked to have access to all my emails and phone messages, and told me that the man could have been arrested on the basis of what they were seeing. As an arrest would not promote my child’s welfare, I agreed that the PC issued him a Restriction Warning under the Harassment Act. He was told that if he ever contacted me again, he would have been arrested immediately. He signed a paper, in which he declared that he would only contact me through his lawyers. Three months later, he violated the warning.

My ex fiancé did not come at our son's birth, and did not put his name on our son’s birth certificate; he refused to assist the child when he was in intensive care and any time thereafter, when he was informed of medical emergencies. I took the matter to the Courts, asking for recognition of paternity and regulation of maintenance and contacts. I was unable to request a psychiatric assessment for him, as only married partners of relatives can do so. I insisted that if he requested contacts with my son, these should take place possibly through a social worker, and should be regular.

The Judge said that the father has a right to access, but there is no mechanism that can guarantee that an absent parent has regular contacts with his children. The absent parent can make appointments and fail to attend, and this does not jeopardises his right to access. This is exactly what happened for years- my son’s father requested appointments that were regularly cancelled.

This story is important because it helps to highlight a number of ethico-legal issues that are significant to many people, and that yet are not on the bio-ethics agenda. For example, one issue is about how our Family Laws protect our children’s welfare. The Law offers no protection to the child against the harm that absent parents can cause when they abuse of their right to access. A father, or the absent parent, has a right to access to his child (an indisputable right), but he (or she) can do whatever s/he wants with this right. It is clearly of great distress to the child to be regularly disappointed. Whereas many other forms of psychological abuse (mobbing, harassment, discrimination, for example) are recognised by law and people are protected against them, this form of psychological abuse to the child, who is also very vulnerable to his/her parents’ behaviours, is something on which law and society do not express themselves. I have met several mothers and fathers who, just like me, have to minimize on a daily basis the harm that the absent parent's inconstant behaviour and unreliability causes to the children. But my story also raises the issue of the social response that we should give to the private behaviour of people who hold special professional roles. Should these sorts of affairs be regarded as just private, if the agent is also a member of the political or ethical profession? Whether or not ‘Mr White’ declares to be racist might be purely Mr White's business. However, if Mr White was Ministry for Equal Opportunity, his statements would take a public vest in virtue of Mr White's role. It is the credibility that is at stake here. If Dr Shipman took a lectureship and gave a public lecture about the sanctity of life and the duty to preserve lives, would he be credible?

Private choices do sometimes impact on professional roles, and that the say that the quality of a piece of work is independent of the life-style of the author is not true for all works and all professions. People who hold particular professional roles, for example those who are responsible for the protection of public interests, should avoid life choices that openly contradict what they practice. What is at stake, here, is not only the quality of the job that they offer (Dr Shipman could be smart enough to write beautiful and touching lectures on sanctity of life), but also their credibility.

It is indisputable that, as ethicists, we have great responsibilities towards the public. We must be credible, if we wish to hold such a role, and it seems to me that some private affairs, like those that I happened to experience, do impinge on the credibility of an ethicist. They might also have a negative impact on the respectability of ethics itself. Contemporary ethics is populated by rich debates on what sort of life there should be. We should not limit our discussion to what sort of lives there should be: we should reflect on what sort of life we should have, if we want to remain trustworthy representatives of ethics, and if we want to protect the reputation of ethics as a discipline that is indispensable to society. I am interested to hear people's viewpoints on this topic.

"Your Father Died of a Disease Called Cancer": Explaining Death to Children

As a followup on my recent thread about behavior and education of children regarding respect or dignity relative to the life and death of animal creatures, I wanted to extend the topic to the explanation of death, particularly the death of a family member, to children. Sometimes it is well done and sometimes it is not and when it is not and perhaps even when it is, the children may have difficulties coping with the consequences.

In Los Angeles, we have an excellent resource to help families deal with death in the family themselves but also with regard to communication with their children and help when the child can't cope with what has happened. The resource is "Our House". It is our local grief support center (the e-mail address www.ourhouse-grief.org). We have taken our first year medical students there over the years to learn about the dynamics of grief and the approach to support and the students were pleased with the experience. The students also had a chance to ventilate to the counselor and the group their own personal experiences with death in the family.

I want to thank Lauren Schneider, LCSW who is Clinical Director of Child and Adolescent Programs at Our House for permission to put her handout "Seven Suggestions for Explaining Death to Children" on my blog. I would like to read any comments by my visitors about these suggestions and also how they themselves handled the issue of death in the family themselves or with regard to the communication with children. ..Maurice.




OUR HOUSE
GRIEF SUPPORT CENTER

Seven Suggestions for Explaining Death to Children

• Explain the immediate cause of death simply and honestly - rather than using euphemisms or giving a philosophical or religious interpretation.

“Your father died of a disease called cancer.” rather than “God took your father because he was a good man.” or “Your Dad is visiting Heaven.” or “Your dad died because he was very sick.”

• Offer reassurance about their fears. Children who experience the death of a loved one often fear for themselves or the lives of other family members. Talk openly and honestly with children . . . explain that most people live ‘til they are very old.

• Offer reassurance that they are not to blame for the death. Many times children believe that they “caused” the death because of misbehaving or arguing or wishing harm. Clearly explain that this does not cause someone to die.

• Use correct terminology when explaining what happens to the body when someone dies. Clearly state that the person’s body has stopped working, that the person has died, and that they won’t be coming back. Explain the process for burial/cremation and make it clear that the person cannot feel any pain.

• Develop a plan with children regarding who will care for and love them should something happen to the surviving parent.

“Mommy doesn’t plan on anything happening to her but if something does, Aunt Jenny and Uncle David will be there to take care of you.”

• Include children in family mourning rituals. Explain what they can expect to happen during the ritual and ask them if there is anything special that they would like to do. Have a caring adult there to support them and answer any questions they might have.

• Accept children’s feelings about the death. Children often have a wide range of emotions after a death. Children grieve differently than adults. Developmentally they can only handle small amounts of pain/grief at a time; therefore, they may be openly sad one moment and happily playing the next. This is normal behavior especially for younger children.

www.ourhouse-grief.org
Copyright our house 2007

“I’ll Forget All the Bad and Remember Only the Good”

From Chapter 9 of Louisa May Alcott’s “Little Women”, Meg says to her mother regarding any disturbing events experienced at the party she had attended, “I won't let it hurt me. I'll forget all the bad and remember only the good..”

Perhaps in the time of Louisa May Alcott, Meg’s response to her mother’s concerns was more in the way of wishful thinking. However, this is the 21st Century and things have changed. We now have neuro and psychopharmacology research and practice and there is an increasing probability that people with traumatic experiences of all sorts and who would be candidates for the post-traumatic stress disorder (PTSD) symptoms and associated deteriorated quality of life now may,indeed,have the chance to “forget all the bad” and live more comfortable lives. In fact, currently there is use of beta-blocker drugs to attempt to do just that and there is a good possibility that more effective and safe drugs can be available in the future. But as the target article and commentaries about the subject of drug prevention of PTSD in the September 2007 issue of The American Journal of Bioethics suggests, there are conflicting views about whether memory should be “tampered with”.

Here is the question for my blog visitors: If a safe and effective drug was available to block out a person’s bad memories and preserve the good ones, should that drug be approved for everyone to use? If not everyone, then who? Or is this “tampering” with memory just plain wrong and shouldn’t be done? What would you say? ..Maurice.