Managing ethically questionable parental requests: growth suppression and manipulation of puberty

David Isaacs, Bernadette Tobin, Julie Hamblin, Emma Slaytor, Kim C Donaghue, Craig Munns, Henry A Kilham

Journal of Paediatrics and Child Health
Journal of Paediatrics and Child Health

Abstract
Doctors sometimes struggle with ethically challenging requests for treatment from children’s parents. For instance, we have recently had two requests by parents of children, a girl and a boy, each with a severe developmental disability, for hormonal therapy to suppress growth and puberty: the girl’s parents requested, in addition, hysterectomy and mastectomy. We propose a reliable approach to assessing the ethical and legal aspects of these and other requests for ‘non-therapeutic’ treatment of a minor who lacks the capacity to give informed consent. We argue that a doctor should first assess whether the request is one that he or she can, in conscience, accede to, and then, if it is, seek the authorisation of a court. We outline considerations relevant to the doctor’s assessment of both the ethical issues and to the need for court authorisation.


Isaacs D, Tobin B, Hamblin J, Slaytor E, Donaghue KC, Munns C, Kilham HA. Managing ethically questionable parental requests: growth suppression and manipulation of puberty. J Paed Child Health. 2011 Sep 27;47(9):581-584.

Policy statement–Physician refusal to provide information or treatment on the basis of claims of conscience

American Academy of Pediatrics Committee on Bioethics

Pediatrics
Pediatrics

Abstract
Health care professionals may have moral objections to particular medical interventions. They may refuse to provide or cooperate in the provision of these interventions. Such objections are referred to as conscientious objections. Although it may be difficult to characterize or validate claims of conscience, respecting the individual physician’s moral integrity is important. Conflicts arise when claims of conscience impede a patient’s access to medical information or care. A physician’s conscientious objection to certain interventions or treatments may be constrained in some situations. Physicians have a duty to disclose to prospective patients treatments they refuse to perform. As part of informed consent, physicians also have a duty to inform their patients of all relevant and legally available treatment options, including options to which they object. They have a moral obligation to refer patients to other health care professionals who are willing to provide those services when failing to do so would cause harm to the patient, and they have a duty to treat patients in emergencies when referral would significantly increase the probability of mortality or serious morbidity. Conversely, the health care system should make reasonable accommodations for physicians with conscientious objections.


Committee_on_Bioethics. Policy statement–Physician refusal to provide information or treatment on the basis of claims of conscience. Pediatrics. 2009 Dec;124(6):1689-1693.

The Australian Childhood Immunisation Register-A model for universal immunisation registers?

Brynley P Hull, Shelly L Deeks, Peter B McIntyre

Vaccine
Vaccine

Abstract
The Australian Childhood Immunisation Register (ACIR) was established in 1996 as an opt-out register built on the platform of Medicare, the universal national health insurance scheme. Introduction of financial incentives for providers and parents, linked to the ACIR, followed from 1998. Over the subsequent decade, national levels for receipt of all vaccines by 12, 24 and 72 months of age have risen to 91%, 93%, and 88%, respectively. Conscientious objection to immunisation can be registered, with retention of eligibility for incentives. The ACIR has been important in implementation of a range of measures to improve childhood immunisation coverage in Australia. Linkage of a universal childhood immunisation register to national health insurance schemes has potential applicability in a variety of settings internationally.


Hull BP, Deeks SL, McIntyre PB. The Australian Childhood Immunisation Register-A model for universal immunisation registers? Vaccine. 2009 Aug 13;27(37):5054-5060.

The meaning of being in ethically difficult care situations in paediatric care as narrated by female Registered Nurses

Venke Sørlie, Lilian Jansson, Astrid Norberg

Scandinavian Journal of Caring Sciences
Scandinavian Journal of Caring Sciences

Abstract
Twenty female Registered Nurses who had experienced being in ethically difficult care situations in paediatric care were interviewed as part of a comprehensive investigation into the narratives of male and female nurses and physicians about being in such situations. The transcribed interview texts were subjected to phenomenological-hermeneutic interpretation. The results showed that nurses appreciated social confirmation from their colleagues, patients and parents very much. This was a conditioned confirmation that was given when they performed the tasks expected from them. The nurses, however, felt that something was missing. They missed self-confirmation from their conscience. This gave them an identity problem. They were regarded as good care providers but at the same time, their conscience reminded them of not taking care of all the ‘uninteresting’ patients. This may be understood as ethics of memory where their conscience ‘set them a test’. The emotional pain nurses felt was about remembering the children they overlooked, about bad conscience and lack of self-confirmation. Nurses felt lonely because of the lack of open dialogue about ethically difficulties, for example, between colleagues and about their feeling that the wrong things were prioritized in the clinics. In this study, problems arose when nurses complied with the unspoken rules and routines without discussing the ethical challenges in their caring culture.


Sørlie V, Jansson L, Norberg A. The meaning of being in ethically difficult care situations in paediatric care as narrated by female Registered Nurses. Scand. J. Caring Sci. 2003;17(285-292.

(Correspondence) The unwanted pregnancy

Kenneth E Scott, Sharon H Stone

Canadian Medical Association Journal, CMAJ
Canadian Medical Association Journal

Extract
We were astonished and disturbed to find that in our own hospital 100 infants every year are unwanted during pregnancy and are still unwanted after delivery, and that these are infants of married women with families. There certainly are, then, sufficient numbers of unwanted pregnancies resulting in unwanted infants to presume that they may make up the majority of the beaten and neglected children. We did not prove that they did make up the majority of these children but, as stated in the conclusions, it is a likely possibility.


Scott KE, Stone SH. (Correspondence) The unwanted pregnancy. Can Med Assoc J. 1975 Feb 08;112(3):280.

(Correspondence) Abortion law reform

H.J. Liebeshuetz

British Medical Journal, BMJ
British Medical Journal

Extract

It is surprising that in the discussion on abortion law reform paediatricians have so far taken only a small part. Yet their work will be profoundly influenced by the change in moral attitudes which is behind the pressure to alter these laws. If it becomes generally accepted that any foetus that has, say, a 20% chance of being abnormal is killed, it may become difficult to defend the preserving of life in very premature babies, where the risk of abnormality is similar. . .


Liebeshutetz HJ.  (Correspondence) Abortion law reform.  Br Med J. 1966 May 28; 1(5499): 1359