She died with a cappuccino on her lips
Ethics in health and education
A version of this article was first published: Money in Practice - September 2000
Ethics is 'bubbling' in the health and education domains. Two years ago it was rare for professionals from either of these areas to contact the Ethics Counselling service of St James Ethics Centre.
The two sides of the coin, what I'll call 'sleeping' and 'parking', is I believe what produced this similar result. Both mechanisms result in a lack of time, space and authority for a fully reflective ethical debate at the level of the 'interface workers', ie. the classroom teacher, the nurse and the solo or small clinic medical practitioner. Let's look at the situation of education first.
In the 1950s if teachers were asked about their profession's Code of Ethics, most would have been surprised. In postgraduate education teachers usually studied a subject called 'The Philosophy of Education' and whilst academically interesting it lacked application at the level of practical classroom dilemmas that teachers face today.
As far as a written code, if it did exist then it was held in some ministerial Ivory Tower. Teachers in general believed ‘ethics’ and 'teacher' to be synonymous and since there was black and white clarity as to 'good teachers' there served no need to externalise a code of professional behaviour. Teachers were models of society, who came equipped with answers and were highly trusted by society.
The situation altered in the '70s when changes to curriculum and methodology occurred, eg. Health and Human Relations content and parental involvement. Socrates' questions like “What ought one to do?” and "What makes a worthwhile life?' suddenly came to life in the applied setting. Parents argued that they were stakeholders, society asked as to whose right and responsibility was a child's sex education and what could, would and should be taught, eg. contraception and abortion. This was a short-lived jolt in the awakening of the profession. Perhaps the shock of this vigorous public debate was too much, for as new dilemmas emerged they were quieter affairs.
Today, things are different, Sleeping Beauty seems to have been awakened from her ethical slumber, but not by the kiss of Prince Charming. Reports of teachers abusing students, perceived decreases in the three 'R's, and the suggestion from society that teachers take on even more responsibility are some of the components of the wake up call. It might even be argued that the absence of formal ethical reflection was related to increasing teacher stress.
Imagine you are a classroom teacher, what would you do when a number of children all need your attention at the one time? Who would you choose first and why?
- The class disrupter?
- A child whose parents have just separated?
- A disabled child?
- A child struggling with their history because of a reading problem?
- A bored gifted child?
- A reticent child who you think is being abused by their parents?
- Or the kid who wants you to repeat the instruction?
Reducing the class size is not the answer, choosing between even two of these is difficult. Teachers have this type of dilemma daily and yet it would be hard to find a clear ministerial guideline to answer it. Is teacher stress really a surprise?
The bubbles of awakening in education are many – some examples include:
- Recent State developed codes of conduct
- Publications, eg. NSW Department of Education and Training: The Professional Ethics of Teachers
- Ethical dilemmas are now part of teacher education
- St James Ethics Centre ethics counselling service promoted as a resource for teachers and other ducation professionals
- Conferences, for example, I recently spent two days with a group of fifty school Principals workshopping dilemmas and looking at models of ethical decision-making
Parking permits of health professionals
Whilst the stress of dilemmas is equally present in the health arenas, the medical and health professionals by contrast have well-developed Codes of Professional Conduct, regulatory practices and Ethics Committees. These all developed out of earlier beginnings like Hippocrates' Oath and dictums of "First – do no harm".
As with teacher stress however, the health professional still experiences the stress of the ethical dilemma as they live their everyday professional life. There is a split between those experiencing the dilemma and those making 'the laws'.
Whilst the individual experiences the dilemma the actual philosophical dialogue occurs in 'inner sanctums'. The issues have never been neglected as with teachers, but are put in boxes and compartmentalised. In other words they are parked in appropriate spaces by those who have 'permits' to 'drive the dilemma'. The people with parking permits are the ethics committees of the professional bodies, eg. AMA, APsS, the regulatory procedures, the ethics committees of universities and hospitals, the Government, the United Nations and the Judiciary.
Although an extremely responsible, thorough and professional approach, the wise reflection and the extensive philosophical discussion of the elders is not available to the masses – the rules are handed down like the 'stone tablets' (difficult to digest) with a few accompanying guidelines.
This was and still is the predominant culture but there is movement towards allowing others to enter the debate. Currently there are changes bubbling through medical training that encourages ethical reflection of future doctors. Horsley (The Australian, 21 August 1999, p.14) writes of these new teaching methods.
It is intended to produce doctors who will be more sensitive to ethical considerations and who will continue to update their knowledge.
This experience, with similar changes happening in related disciplines, eg. psychology will help in deeper reflection on these 'stone tablets'. However one often does not, after leaving university, 'hear one's own voice' until face to face with a dilemma. It is then that the stakeholders are no longer paper scenarios but real flesh and blood people. There are many stakeholders, they know their rights and are given a voice within a democratic, litigation-laden culture.
The individual 'on the shop floor' experiences a number of competing pulls like the teacher in the previous scenario. There will be professional codes, legal acts, various stakeholder needs, hospitals, cultures specific to departments, professional clinics, along with personal beliefs about one's duty and obligations, desired outcomes and the character of their personal/professional self.
This, like the teacher scenario is experienced daily within a busy worklife. At the Ethics Centre we rarely received calls to explore these dilemmas in the past (we got the odd psychologist – no pun intended!). However there is now a change in this with an increase in the frequency of calls from the area of Health and Education (around 40% of all calls in the past six months). Personnel in the health industry, including administrators and doctors now represent the fifth largest body of people to use the Ethics Helpline.
One such call came in on our 1800 number. It involved four Allied Health Professionals who had been considering a specific situation of patient autonomy and duty of care. They were considering aspects relating to the various stakeholders, the complexities of multi-disciplinary teams, The Consent to Medical Treatment and Palliative Care Act 1995, the Crown Law opinion on how this Act should be interpreted in dysphagia management and documents regarding patient autonomy and duty of care.
The callers in this case, interested in ethical dialogue offered to bring their dilemmas into the wider arena (as printed below). I wish to thank them for their courage in their quest to increase the professional ability of themselves and of others in their industry. I also encourage readers to write in with your dilemmas, as a means to broaden and deepen the medical profession's capacity to work in ways that not only recognise the medical status of people and practices but also their moral worth.
The Allied Health dilemma
In regard to the above mentioned Act the following points were part of the discussion:
- The law protects a competent adult's right to self-determination, including a patient's right to consent to or refusal of medical treatment.
- Duty of care underpins patient autonomy, rather than over-riding it.
- Although a patient cannot demand that normal food be provided, he or she is at liberty to refuse feeding by tube once solid food is no longer advised. To enforce tube feeding constitutes assault.
Alee is a patient with dementia who is not considered palliative. With an assessment of severe dysphagia Alee is considered unsafe for any food, fluids or medication ingested orally. The entire medical team agrees with this assessment stating the risk of choking and aspiration is very high.
Alee, who really enjoys eating and drinking is very anxious at any attempt at tube feeding and is very clearly saying “No”. Alee's family visit her regularly and all but one son, Stephen, are supportive of having oral intake. The family understands the risks of choking and aspiration and this is further explained by Alee's daughter Dianne, who is herself a doctor. They also understand patient rights as her oldest son Lawrie is a lawyer. Dianne and Lawrie argue that their mother is very frightened about tube feeding and is refusing this. They further suggest that anxiety about the alternative feeding technique is more of a risk to Alee's health and well being than carefully modified oral feeding.
Suppose for a moment, in your role you have a lot of contact with all 'stakeholders' – Alee, her family and the medical team of which you are part. You often hear the family arguing with each other. Her youngest son, Stephen with whom she was very close is a social worker. He wants to take no risks and believes that his mother does not understand what she is refusing and that if she did she would happily consent.
Typical of the bickering has been statements like:
- I feel the hospital is being over cautious, the risk isn't that high. You know how they are these days!
- What's the chance t hey have simply become 'litigation edgy' because of 'that death' in the ward last week?
- She doesn't want tube feeding, that's one thing that's clear!
- It's sad to see mum this way, remember how much she enjoyed her food?
- Yes, she ate every meal as if it was her last.
- Well, it may be her last! I'll never speak to either of you if she chokes and dies. She doesn't know what she's saying 'no' to. I know her, you two hardly ever saw her until all of this happened.
So, what are the issues and what would you do? In the situation above would you see the situation differently if:
- Dementia was not involved.
- The family all agreed “No tube feeding”.
- The oldest son had power of attorney.
- A 'trial' oral intake resulted in intense reactions, but not death, which caused extreme emotional stress for her son Stephen who was present.
- The eldest two children are heard talking about their high mortgage, gambling debts and how the 'inheritance' will be a life-saver.
Follow my directions
Consider a patient (Peter) with Motor Neurone Disease who has previously specified an advanced directive that he does not want alternative feeding. Peter states that he wants to keep eating and drinking even at the risk of choking and aspiration. Peter is still competent and wishes to follow his advance directive. His swallowing has deteriorated and oral intake will almost certainly mean choking and aspiration.
- What are the competing principles?
- What would you do?
- How would you feel if you were a close relative?
- What are the ethical obligations of the hospital and policy-makers in regard to the daily difficulties faced by their staff?
Let's have a cuppa
Jane is a competent patient who has had neck and head surgery. She is not palliative. Whilst tolerating thickened fluids, thin fluids would risk aspiration. Jane would love a cup of tea and her family is supportive of this. Surely a cup of tea can't do much harm, they argue, she doesn't mind if she doesn't eat, just let her have a cuppa!
Often when we work through dilemmas with people in our Counselling service we use our 'dilemma model'. The final stage in this model is to imagine someone you hold dearly, eg. your child, lover, mother or best friend and put them in the place of each of the stakeholders, how would you feel if they were on the receiving end of your decision?
With the above dilemma I placed my son Matthew (and his gentle loving heart) in this position. I imagined his knowledge of how I love cappuccinos and how he would feel my longing. I could see another loved one, Matthew's wife Annette, a nurse, trying to explain the risks to him. Then I wondered about the circumstances if death was imminent for other reasons. If I had a year to live would the stakeholders view it differently to if I only had one month to live?
For myself if I only had four weeks then I'd say, “Let me risk death by cappuccino!”. But then I also saw the picture of my loved one's faces as they watch me choke on the froth.
These issues are not black and white as the legal acts and codes of ethics seem. What would you do if your loved one were in all of these stakeholder positions, including the CEO of the hospital?