I have the need to return to this dilemma because of the astounding amount of stories I have read recently about children dying because parents refused medical treatment for their child and relied solely on prayer. In my last post about religious freedom, I concluded that it is very important to respect a person’s religious beliefs at all costs, but after reading a few more articles and stories, I had to reflect on my previous thoughts.
Here are some of the stories I have found recently:
In 2008, an 8 year old girl suffered waves of nausea and vomiting and eventually went into diabetic shock and passed away. Her parents only action was to pray for her healing. This death could have easily been prevented as diabetes is a relatively common and treatable condition. The parents are on trial for reckless endangerment of a child and risk 25 years in prison if found guilty.
In some states in America, a parent cannot be convicted of child abuse or negligent homicide if they can prove they genuinely believed that calling God, instead of a doctor, was the best option available for their child.
In 1997, an undiagnosed haemophiliac toddler, suffer countless cuts and severe bruising in his short life. The incident that lead to his death was a cut on his foot which bled for 19 hours, while his parents prayed for him and did not even think to call for emergency medical care. The mother’s statement to the police was this: “Your children are
a gift from God. They are angels on loan from heaven. If He decided to take my angel back, then I can’t question Him why. I asked for Michael to be healed, and God took Michael.”
I recently saw a patient at Red Cross Children’s hospital who was not tolerating her feeds, and was losing weight rapidly. An NGT was inserted but the child continued to lose weight. She was a good candidate for a PEG, but consent from the parents was needed. The mother was asked and she refused based on cultural beliefs, later the father was contacted and he reported he would need to talk to his parents before agreeing to the procedure. The father phoned back and asked not to have the procedure done based on his cultural beliefs. As nothing else could be done medically for this little girl, the doctors watched her deteriorate. She is still currently battling on, but has a poor prognosis unless the procedure can be done.
There are many documented examples of divine healing, it does happen and should not be ignored. There are cases where prayer was the only effective “treatment” when medical care was concluded to “inoperable” or “terminal”. At times, there is no medical answer to the cause of this spontaneous healing. Many religions, including Christianity, Islam, Judaism, Buddhism and many other smaller religions believe strongly in prayer for disease and disability, and most countries allow for this in their constitution. The Southern African Association for Pastoral Work (SAAP) has been strongly involved in reaching the need for spiritual intervention.
The conflict of interest
In these situations there is a clear conflict between the right to autonomy and the right to beneficence.
Autonomy can be defined as “personal rule of the self that is free from both controlling interferences by others and from personal limitations that prevent meaningful choice”. Respect for a patient’s autonomy is one of the most fundamental ethical guidelines. As clinicians we have the duty to create the environment to ensure autonomy is possible for each patient, this includes providing them with all necessary information regarding treatment and respecting their decisions.
Beneficence can be defined as “action that is done for the benefit of others. Beneficent actions can be taken to help prevent or remove harms or to simply improve the situation of others.” The goal of all the actions for our patients should have the goal of benefiting the patient in some way. Apart from treatment, this could include protecting and defending the right’s of patients and helping individuals in danger.
There are often certain circumstances where the patient’s right to autonomy and the clinician’s duty to beneficence come into conflict, and certain decisions based on religion (as mentioned earlier) are perfect examples of this. Other examples include a patient’s decision to continue smoking after bypass surgery, or a patient refusing ARV’s for the treatment of HIV.
How do we as clinicians go about dealing with this kind of dilemma?
In South Africa, health professionals are guided by the HSPCA to obey the wishes of patients, there are cases where the advance directives of the patient are not respected, often due to doctors overruling the family and refuse to stop treatment.
Our duty is to inform the patient or the parents of the patient of the risks and benefits of their decision. It is especially to stress the importance of medical care in these circumstances. If the patient still continues to remain firm on their decision, the clinician has the right to protect or defend a patient’s rights, particularly when it involves a child. This option should be made available to health professionals if they see it necessary.
It is never easy when fundamental ethical guidelines come into conflict and finding the ‘best’ option to deal with these situations should be carefully considered. Personally, if I was witness to a child not receiving treatment based on the religious beliefs of the parent, I would feel compelled to fight for the child’s right to treatment and strongly consider the legal route.