Bioethics Discussion Blog: A Problem of Informing a Juvenile





Monday, October 08, 2007

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?


Date: Fri, Jan 23, 2004 10:43 AM From: To:
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

Date: Sun, Mar 30, 2003 7:48 AM From: To:
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.

Date: Tue, Nov 12, 2002 5:59 AM From: To:
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.

Date: Sat, Apr 6, 2002 10:05 AM From: To:
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..."

Date: Fri, Mar 23, 2001 1:35 PM From: To:
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

Date: Sun, Jun 4, 2000 4:30 PM From: To:
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

Date: Mon, Apr 19, 1999 8:41 AM From: To:
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.

Date: Thu, Nov 26, 1998 7:26 PM From: To:
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.

Date: Tue, Sep 22, 1998 4:12 PM From: To:
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.

Date: Sun, Sep 6, 1998 3:18 PM From: To:
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.

Date: Fri, Aug 14, 1998 3:22 PM From: To:
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.

Date: Wed, Jul 29, 1998 9:43 AM From: To:
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.

Date: Wed, Mar 18, 1998 4:03 PM From: To:
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,

Date: Fri, Feb 13, 1998 11:55 PM From: To:
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)

Date: Sun, Jan 11, 1998 5:01 PM From: To:
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.

Date: Tue, Nov 11 1997 7:56 AM From: To:
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.

Date: Fri, Sep 5, 1997 4:02 AM From: (Derek Xanders) To:
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.

Date: Wed, Jul 16, 1997 2:21 AM From: To:
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

Date: Mon, Jun 30, 1997 12:48 PM From: (beverly bowers) To:
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.

Date: Wed, Feb 12, 1997 4:11 PM From: To:
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

Date: Tue, Nov 26, 1996 9:01 PM EDT From: To:
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.

Date: Tue, Oct 8, 1996 8:05 PM EDT From: To:
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

Date: Tue, Sep 17, 1996 1:32 AM EDT From: To:
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

Date: Sat, Aug 17, 1996 11:51 AM EDT From: 71600.1123@CompuServe.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


At Friday, October 19, 2007 12:59:00 PM, Anonymous Anonymous said...

Dr. Bernstein, we went through a period when we thought my youngest son had Wegener's Granuloma. The doctor who (mis)diagnosed him asked me how I wanted to deal with the situation ... did I want to tell my son, or did I want him to tell my son ... or did I just want to not say anything at all "for the time being." Considering what he told me about my son's condition, silence "for the time being" could well have been a choice to simply not say anything at all.

At the time, my son was a few years older than the little girl in your post. I told him what I had been told about his condition, explained the possibilities, and told him what his options were. He had a lot of excellent questions, and took the news amazingly well.

A biopsy did, indeed, show granuloma, but a more experienced physician told us that he believed it wasn't Wegener's, but rather granuloma which was caused by an old injury. Turns out that he was right.

I never regretted telling my son, and he has since told me that he would have been upset to not be told.

I believe that, at any age, a child (or adult) has the right to know what is happening to their bodies - insofar as they are capable of understanding the situation, especially if there are treatments that could help by making a person more comfortable, or perhaps even by prolonging life, if the quality of living is still good.

Refusing to do so so like stealing something we have no right to take. I really think it's a form of cowardice on the part of the parents.

At Friday, October 19, 2007 5:50:00 PM, Blogger Maurice Bernstein, M.D. said...

I agree.but sometimes parents are cowards because they fear dealing with their upset child and the child's and the disease's unanswerable questions.

Also, during the teen years I think there is a rapidly developing
intellectual maturity for their own personal decision making that might be more developed in your son than a 10 year old. ..Maurice.


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