Withholding and Withdrawing Life Supporting Treatment in Neonates
The author will critically examine an ethical issue that could occur whilst caring for a highly dependant child. The ethical issue being examined is the withholding or withdrawing life supporting treatment in neonates. Although there are many legal issues associated with this topic, this paper will focus on the ethical issues.
Rowson (1990) defines the term ethics as thinking and reasoning about morality. Beauchamp and Childress (1994) assert that ethics is designed to illuminate what we ought to do by asking us to consider and reconsider our ordinary actions, judgements and justifications. They also developed an ethical framework based on 4 moral principles. These are beneficence, non-maleficence, justice and autonomy. Autonomy underpins nurses ethical practice stems from the nature of the infant's prematurity and questions the nature of personhood and infant rights (Brophy 2002). Non-Maleficence requires that nurses do no harm (Brophy 2002). Justice addresses the allocation of cots and resources (Brophy 2002). Beneficence allows the nurse to actively prevent harm (Beauchamp and Childress 1994). Any decision to act or not to act in order to save or preserve life is an ethical decision. Care of the vulnerable neonate involves complex ethical decision making (Chally 1992). Nursing ethics is concerned with the application of ethics complicated by human relationships Crawford and Hickson (2002). The practicioner may need to resolve and differences between what they believe personally and what might be expected of them professionally (Edwards 1996).
Dilemmas about withdrawal of treatment were highlighted in the early 1970's. The issues mainly focused on infants born with major congenital anomalies (Lorber 1972). Advances in prenatal screening and diagnosis has changed the emphasis and dilemmas now exist surrounding extreme premature infants with neurological damage (McHaffie and Fowlie 1996). Mortality rates have fallen overall but there has been an increase in deaths following the withdrawal or withholding of treatment. In an American neonatal unit in the early 1970's, it was estimated that 14% of deaths followed withdrawal of treatment (Duff and Campbell 1973). Whitelaw (1986) reported that 30% of deaths in a London neonatal unit occurred after the same decision and 52% occurred after the same decision in an Aberdeen neonatal unit (Campbell et al 1988). The House of Lords Select Committee estimated in 1994 that the figure was 30% for the United Kingdom as a whole.
In paediatrics all care decisions taken should reflect the child's best interests. Examples include The Children (Scotland) Act 1995, and The UN Convention on the Rights of the Child (1989).
The UKCC Code of Conduct (1992) also states that nurses act in the interests of their patients. Rose (1995) considered what best interests are and identified a number of themes associated with it. These include the intention to do long term good. Sometimes it may be necessary to cause short term harm, such as painful treatment in order to promote long term good, such as survival.
However it may be assumed that it is always in the child's best interests to live. There are situations such as living with severe pain and suffering or extensive neurological damage which could be considered not in the child's best interests (Crawford and Hickson 2002).
However because the infant's best interests are not always clear parents and medical staff are faced with difficult treatment decisions (Blackman 1995). The decision to allow the death of a neonate has to be ethically justified (Graham 1999).
Ethical decision making combines 2 philosophies, decision making theory and moral reasoning (Pierce 1997). Pierce (1997) found that there are 5 fundamental areas that may lead to ethical problems. If the decision maker is unable to make a decision and needs a surrogate decision maker. This is particularly applicable to neonates. When acceptable forms of treatment are unavailable, when outcomes are uncertain and high risk and the cost is high in terms of emotional and financial losses, again this is relevant to neonates. When decisions suggest a procedure that is inhumane and when there is conflict surrounding who will make the decision. This again is relevant to neonates as multidisciplinary involvement can lead to conflicts in care and decision making.
The Royal College of Paediatrics and Child Health (1997) outline 5 situations where the withholding of treatment might be considered.
1. The Brain Dead Child. In the older child where criteria of brain stem death are agreed by two practitioners, it may be feasible to provide basic cardio-respiratory support by means of ventilation and intensive care. It is agreed within the profession that treatment in such circumstances is futile and the withdrawal of current medical treatment is appropriate.
2. The Permanent Vegetative State. The child who develops this state following trauma or hypoxia and is reliant on all others for all care and does not act or relate with the outside world. It may be appropriate to withdraw current therapy and withhold further curative treatment.
3. The No Chance Situation. The child has such a severe disease that life sustaining treatment simply delays death without significant alleviation of suffering. Medical treatment in this situation may be deemed inappropriate.
4. The No Purpose Situation. The patient may survive with treatment, the degree of physical or mental impairment will be so great that it is unreasonable to expect them to bear it.
5. The Unbearable Situation. The family and/or the child feel that in the face of progressive and irreversible illness further treatment is more than can be borne. They wish to have a particular treatment withdrawn or refuse further treatment irrespective of the medical opinion on its potential benefit. Oncology patients may be included in this category.
In situations that do not fit in with these five categories or where there is dissent or uncertainty about the degree of future impairment the child's life should always be safeguarded by all the health care team in the best way possible. Doyal and Larcher (2000) believes that the guidelines can be criticised as being too general to be useful, stigmatising to some individuals or groups and striking the wrong balance between law and morality.
Society as a whole has not yet decided who makes decisions related to the right to life or death and who is responsible for the quality of life of neonatal patients (Raines 1996).
It may be assumed that parents have the right to decide treatment for their baby (Yeo 1998). The Children (Scotland) Act 1995 states that a parent has the responsibility to act as the child's legal representative and safeguard and promote the child's health.
McHaffie and Fowlie (1996) outline 6 arguments against parents being asked to decide about withholding or withdrawing treatment. They believe that parents are too emotionally stressed to make a decision, and that the burden of responsibility is too much. The parents own interests might conflict with the best interests of the infants. Parents also lack medical knowledge and experience, which might lead them to make inappropriate decisions. Decision making may be prolonged at the expense of the infants wellbeing and that parents are ill prepared for such a momentous decision. This is further supported by Brandt (1978) who believes that parents are unable to think clearly and find it difficult to imagine the future with a disabled child.
However McHaffie et al (2001) feel that parents clearly need to be involved in the decision regarding their child. This is further supported by Tomlinson and Czlonka (1995) who state that parents should have a say for their infant but medical and nursing staff must have the right to say no or they would not be fulfilling their moral obligation to promote the patients welfare.
A study by Hinson-Penticuff (1989) showed that nurses experience significant emotional distress when they believe that therapies have resulted in infants suffering without proportional benefit. Raines (1996) found that nurses felt frustrated at performing treatments that would not improve the infants quality of life. Tilford and Fiser (1996) found that doctors also have a responsibility to recognise the limits of critical care and prevent any undue suffering. Doctors and nurses have an obligation in beneficence which is to help patients in what they do and non-maleficence which is not to hurt them (Hinson-Penticuff 1989). The obligation of the Code of Conduct (UKCC 1992) as to be an advocate for the child and family raises many ethical issues. The role of the nurse advocate is to prevent harm and promote good. Seedhouse (2000) believes the normal meaning of advocacy is to speak on the behalf of some other person as that person perceives his or her interests.
A number of factors may influence a nurses decision to act as advocate: the nurse needs to have reasoned competently on the basis of adequate information, there may be a conflict with the interests of others the nurse should be in agreement with the decision or, if not should effectively support that position.
There can be conflict however of who exactly the nurse is representing (Seedhouse 2000). As neonatal nursing is founded on the principles of family centered care this creates potential conflict of interests between the neonate, the mother, the two parents and the family. Due to the fact that neonates can not know their own interests yet alone express them to a nurse (Crawford and Hickson 2000), there is clearly a need for something like advocacy on the neonates behalf but there are serious questions whether nurses can or should fulfil such a role (Crawford and Hickson 2000). Copp (1986) and Mallik (1997) are doubtful whether every single neonatal nurse could develop all of the skills and qualities required by an advocate. Allmark and Klarzinski (1992) suggest that nurses have insufficient autonomy to carry out the role effectively and have to develop very thick skins and be willing to risk dismissal.
Crawford and Hickson (2002) states that there are no moral significant difference between withholding treatment and withdrawing treatment, assuming the same objective of preventing harm and relieving suffering. However there may be a difference in the mind of the individual in particular the neonatal nurse.
Withdrawing treatment might be viewed as more acceptable because at least the neonate has been given a chance of survival. Either the treatment has not been successful or the burden of treatment has become so great as to outweigh any slight chance that the neonate may survive. Decisions regarding the withholding of treatment are made on the same premise but may cause greater anxiety for the neonatal nurse. There are worries that a mistake has been made and that an infant who would of benefited from treatment had been denied it.
The British Paediatric Association has shown that withdrawal of treatment accounts for up to 30% of neonatal intensive care deaths in the United Kingdom. In these cases the patient has had no prior quality of life on which to base a judgement. The neonate has no personality and unable to contribute to decision making. The majority of case decisions are made following discussion between parents and doctors and any decision made is not taken lightly. The Royal College of Paediatrics and Child Health guidelines published in 1997 are useful when having to make such a difficult decision, however the author has noted that the guidelines only cover a small number of situations that could occur in neonatal practice as opposed to greater detail given to decisions made in later childhood. There is clearly a need for future research into the withdrawal of treatment in the neonatal field and perhaps publish specific guidelines for this vulnerable patient group.