Posts Tagged ‘ethics’

Ethics: don’t be a shit person

September 20, 2011

One day, I hope to be a clinical educator and lecture medical students in ethics.*

I could save universities time and money with my easy one step process to ethical enlightenment.

Step one: Don’t be a shit person

I would have lecture slides each with various fonts stating “Don’t be a shit person”

(there would, of course, be hyperlinks to direct them to the definition of “shit person” and maybe a demonstrative youtube video)

Students could buy a pocket book from my online store to help them through various difficult situations in hospital.

Each page would say:

“Don’t. Be. A. Shit. Person.”

There would be an Iphone & Ipad app.

I’d also sell those silicone wrist bands with “D.B.A.S.P” on them.

Thus ending the tortuous pain of medical students everywhere who attempting to write 3000 word ethical essays analysing cases that could essentially be summed up into one sentence (see above).

*Not. Really. Unless I get to roll out the above plan. Then it’s on.

Ethics

June 1, 2009

ear2

Ethics Assignment: Is it morally unreasonable to withhold cochlear implants from profoundly deaf children because their parents wish their child to be a part of the Deaf community?

My succinct answer is no. It is not morally unreasonable. People can do whatever the hell they want to.

But, in the interest of fleshing out this blog, below lies the full version which I handed in last monday. The first of our assessments. Which is bizarre considering that we’ve been at uni for 19 weeks already. All critical comments welcome. Tear it to pieces. Feedback is good. 

The debate surrounding cochlear implants (CIs) in children covers informed consent, physicians’ obligations, the concept of deafness and parental right to autonomy. Conflict has emerged between medical and media portrayals of the CI as a ‘miracle device’, versus the contrasting social, cultural and linguistic views of many Deaf people (Hyde & Power, 2000). This paper discusses the importance of belonging to a culture versus the importance of overcoming a disability, the autonomy of the parent versus the physician’s obligation to protect the autonomy of the child and, most importantly, the right to an informed consent process.

 

Assumptions & Semiotics

This article assumes the morality in question is that of the physician advising the parents.

Proponents of the implant refer to the need to intervene as young as eighteen months to capture the child’s neurologically critical period for the development of spoken language (Hyde & Power, 2000; Hagan, 2004; Watson, 2008). The debate would be moot if age was insignificant as surgery could be delayed until the child is competent (Hladek, 2002). This paper, therefore, assumes the children in question are pre-lingual, thus not of age to consent or ‘Gillick’ competent (Kerridge et al, 2009).

This article does not assume parental auditory ability. It should be noted that ninety percent of deaf children are born to hearing parents (Brusky, 1995). Also, within the Deaf community, ninety percent of deaf people have a deaf spouse. Hagan (2004) attributes this to the advent of sign language in the 16th century and deaf schools. It is considered the reason why the incidence of the commonest form of genetic deafness has roughly doubled in the past 200 years (Hagan, 2004). Both the hearing and deaf parental perspective is considered in this paper.

In terms of semiotics, the word “withhold” connotes heavily that a CI is necessary, which is a biomedical, hearing opinion. It should be noted that the necessity of any medical procedure is subjectively determined by an individual’s cultural context (Galanti, 2008).

 

The importance of belonging to a culture

Intolerance for diversity arises when an individual makes a judgement concerning the normality of an individual with a different series of cultural and ethical norms (Hladek, 2002). Healthcare professionals tend to emphasise the importance of cognitive and physical function to quality of life, whereas non-health professionals emphasise the importance of social relationships (Kerridge et al, 2009, p. 319) While to a hearing, health professional, the choice to forgo a CI may seem morally unreasonable from an etic (outsider) perspective, they must try to see the emic (insider) perspective (Galanti, 2008, p. 17). There are two perspectives to be considered: the medical community’s, and the Deaf community’s.

The medical community conceptualises deafness essentially as disability and abnormality (Crouch, 1997, p. 15). The ethical concept of the Capabilities approach considers “being able to use the five senses” a functional capability necessary “for a good human life” (Kerridge et al, 2009, p. 28). Hearing parents following this ethos would find their child deficient, and strive to overcome the disability.

Even if parents were open to Deafness as a cultural trait access to Deaf culture may not be logistically possible for some families, due to distance, lack of deaf schools, and lack of access to sign language.  The relatively small numbers of deaf individuals makes community building difficult (Hladek, 2002). For some families, a viable deaf community is either out of reach or non-existent. Thus, they strive for their child to overcome their disability and access the hearing world.

Deaf community representatives, however, see Deaf people more as a cultural, linguistic minority (symbolised by their use of sign language) than a disability group. They are only‘handicapped’ when the conditions and restrictions of the majority community institutions and attitudes make them so (Hyde & Power, 2000). The decision to forgo cochlear implantation for one’s child, far from condemning them to a world of meaningless silence, opens the child up to the Deaf community’s rich history, language and value system (Crouch, 1997, p. 14). Within the Deaf culture the child has a context. 

The Deaf community has been recognised by the Commonwealth’s Australian Language and Literacy Policy. It is now recognised that signing Deaf people constitute a group like any other non-English-speaking language group in Australia, with a distinct sub-culture recognised by shared history, social life and sense of identity, united and symbolised by fluency in Auslan. (Hyde & Power, 2000)

 

Will respecting parental autonomy limit the child’s future options?

The majority of literature regarding parental consent for CIs focuses on the parents right to consent rather than their right to refuse treatment. Whilst hearing parents may believe that deafness is truly an infirmity, deaf parents may not. Deferring to parental autonomy, each set of parents should have the right to decide what is best for their child in light of their own subjective values and beliefs (Brusky, 1995, p. 261). Parents enjoy a common law and right to raise their children as they think best and to make important decisions on behalf of their children (Brusky, 1995; Crouch, 1997).

However, the choice not to implant during the neurological critical age of oral language development is considered by advocates of the CI to limit the child’s options. The decision will relegate the child to a specific culture and a specific language (Crouch, 1997). Not to implant will certainly limit employment opportunities that require auditory-verbal skills (Hladek, 2002). Any decision that narrows the scope of the child’s choices in adulthood violates their future autonomy (Hladek, 2002). Without a cochlear implant, a deaf child is resigned to deafness. With an implant, however, the hearing world becomes another option in addition to the deaf community (Brusky, 1995, p. 263). An implanted child may eventually choose not to wear the implant’s external parts and decide to follow the deaf cultural lifestyle. At least, the implant will provide the child with the advantages of biculturalism and the opportunity to function in both worlds (Brusky, 1995, p. 263).
The informed consent process

The moral obligation of the physician is to facilitate informed consent (Hladek, 2002; Brusky, 1995). In order to give consent properly, the legal requirements are that the person giving the consent be fully informed, mentally competent and under no duress (Kerridge et al, 2009, p. 83). The idea of informed consent is premised on the assumption that decision making about medical care should take account of patient’s values, preferences, goals and needs (Brusky, 1995, p. 266). The informed consent process requires an explanation of the purpose and nature of the intervention, the benefits, risks, discomforts, alternative options, outcomes, and consequences of not having the proffered option. Based on this process, parents or patients consent to or refuse a proposed surgery or treatment (Berg, 2005).

When consent is being sought for treatments that have an effect on quality of life, social interactions and cultural commodity, informed consent should be expected to extend beyond medical issues (Berg, 2005). Hyde & Power (2000) found that informed consent documents pertaining to cochlear implants (CIs) for young children are almost exclusively based on the medical aspects of deafness, often omitting the social, linguistic and cultural perspectives. In this particular case, the physician in question has obviously included cultural aspects in his/her informed consent process, and has therefore, provided a thorough informed consent process.

Failure to provide complete information, even when inadvertent, can create stress and is ethically questionable (Berg, 2005). Health care professionals may interpret cases and make moral judgements in a manner that reflects their own biases, value systems or ignorance and this is not a satisfactory basis for moral judgements. If a physician uses the casuistry framework of ethics they may exhibit strong paternalism as a means of influencing decision-making (Kerridge et al, 2009, p. 22). As the decision to implant a child is not a life-or-death choice but rather a preference for one lifestyle over another, mere disapproval of a particular family’s lifestyle or values or disagreement with a particular decision is insufficient to justify overriding parental autonomy (Brusky, 1995, p. 269). Thus, the only situation in which a physician should be concerned with the morality of a decision is if that decision was based on an incomplete informed consent process.

However, it could be argued the physician has more knowledge and perhaps insight into the child’s future than the parents. Parents may not realise how difficult it will be for their child to learn oral language past the critical neurological period. Hearing parents may be unaware that members of the Deaf community rarely move outside their cultural community (Hladek, 2002). The Deaf community readily admits that many deaf individuals do not intimately know their biological parents or other members of their families because of communication difficulties (Hladek, 2002). Hladek (2002) argues that we can’t educate a child into a deaf culture and expect for that child to return to his/her biological hearing parents without serious consequences to the family bond. Implantation of a CI gives the family an opportunity to develop a degree of shared oral language.

 

Summation

Though there are sound arguments for each side, this paper finds that it is morally reasonable for a physician to withhold a CI from a profoundly Deaf child because their parents wish them to be a part of the Deaf community, on condition that that the physician has provided the parents with a thorough informed consent process. The informed consent process should outline medical and social information clearly and thoroughly, without paternalistic bias from the physician. The moral obligation of the physician ends at the informed consent process. Parental autonomy should be respected due to a parent’s legal right to consent or forgo treatment on behalf of their child for a non-life threatening condition. Furthermore, in this case,  the parents’ expressed desire for their child to be a part of deaf culture demonstrates an insight into the importance of belonging to a culture, suggesting that they have been provided with a thorough informed consent process.

 

References

Berg AL, Herb A, Hurst M, (2005) Cochlear implants in children:
ethics, informed consent and parental decision making. Journal of Clinical Ethics 16(3):239-59
 
Brusky, A.E, (1995) Making Decisions for Deaf Children Regarding Cochlear Implants: The legal ramifications of recognizing Deafness as a culture rather than a disability. Wisconsin Law Review, 1995 pp235 – 270
 
Crouch, R. (1997 July/August) Letting the deaf be deaf: reconsidering the use of cochlear implants in prelingually deaf children, The Hastings Center Report v27.n4:pp14(8)
 
Galanti, G. (2008) Caring for patients from different cultures, Philadelphia: University of Pennsylvania Press, 3rd Edition.
 
Hagan, P. Wilson, C (2004 August/September) Falling on deaf ears. New Scientist. 183(2462):36-9
 
Hladek, G. Cochlear implants, the deaf culture, and ethics: a study of disability, informed surrogate consent, and ethnocide. Monash Bioethics Review 2002; 21: 29-44,
 
Hyde, M. Power, D. Informed parental consent for cochlear implantation of  young deaf children: social and other considerations in the use of the ‘bionic ear’. The Australian Journal of Social Issues (serial online). May 2000; 35 (2):117-127
 
Kerridge, I. et al (eds) (2009). Ethics and Law for the Health Professionals. 3rd Ed.
 
Watson, L. Cochlear Implants and Ethics – when do we listen to the voice of the child? British association of Teachers of the Deaf Online Magazine, 2008