Catholic Medical Quarterly Volume 64(3) August 2014
The misuse of autonomy to justify neglect in ethical decision making.
Is it time for a change?
Dr Adrian Treloar, FRCP, MRCPsych, MRCGP,
I have become increasingly concerned about the misuse of autonomy to justify neglect by health care professionals. I therefore question the Beauchamp and Childress “four principles” of autonomy, beneficence, non-maleficence and justice, which have become predominant in UK medicine for ethical decision making. I present cases where failures of care are enabled by the application of the Four Principles. The presumption that capacity is present until proven otherwise together with the pre-eminence of autonomy in the decision making process can accord our most vulnerable patients the responsibility of making decisions. As a result patients come to harm. The suggestion by Gillon that autonomy is the pre-eminent factor in decision making does not help greatly those who lack capacity in either.
The deficiencies in the “Four Principles” mean that they are inadequate as a decision making framework and may make clinicians feel supported in making a bad decision. The four principles must be subject to audit by overarching principles of honesty, compassion, good clinical care and respect for the patient.
Mr. A, a man with schizophrenia developed gangrene of his feet and required angiography and surgery. He refused the treatment on the grounds that his voices said surgery was not required. The surgeon was clear that the best course of action was to proceed with surgery. While accepting that the patient’s judgment was impaired by schizophrenia, the surgeon did not impose treatment because of the strength of refusal. His (invalid) refusal was seen as autonomy and Mr. A was left untreated for fear of infringing autonomy.
Mr. B had dementia and after his wife (main carer) suffered a stroke he struggled at home developing a chest infection. He was falling, chesty, unwell and unsafe. He required a hospital admission. When the ambulance attended he firmly refused to go to hospital. The ambulance crew therefore left stating that they could not infringe his autonomy. But on close questioning it was felt that he did not understand or believe the problems which he had. As he was considered to be at severe risk if left at home, he was sedated with lorazepam and taken to hospital where he was treated for pseudomonas bronchitis.
Mrs. C was an 88 year old lady who had neither dementia nor mental illness. She became unwell following a stroke but was both afraid of hospital and also aware that there are others who require help. She did not wish to put others out and therefore declined hospital admission. Her daughter pushed hard for admission to the stroke unit. With good care and rehabilitation she made good progress. The warden of her sheltered accommodation block commented that “People without a relative to push never get the care they need. Their refusal is simply accepted”.
The four principles for decision making
The concepts of personal autonomy and freedom have featured prominently in British social and political history. They are widely regarded as a very positive aspect of British culture. However, the presumption of mental capacity and the privileged status of autonomy over the promotion of wellbeing may on some occasions result in unnecessary suffering and neglect. The status quo dictates a default position in which the individual is presumed able to make decisions about his or her treatment and has the right to remain autonomous. This then has to be challenged through a proactive process, in which the health professional must provide valid arguments for overriding autonomy.
Importantly the person’s right to receive good treatment enjoys a lower status than his or her right to remain autonomous, so the need to justify a non-treatment is less stringent than the measures required to impose treatment.
The “Four Principles” as described by Beauchamp and Childress consist of autonomy, along with the principles of beneficence, non-maleficence and justice. The principles have been central to thinking on this for the last 3 decades It has been claimed that autonomy is the pre-eminent of these criteria.
In the cases presented, apparently respecting autonomy enabled bad outcomes, which required less work by health care workers than the good clinical outcome. While some would argue that the failures are caused by misunderstanding of the principles, I contend that, in vulnerable adults, the Four Principles trigger failures of ethical decision making and can therefore directly harm vulnerable patients.
How do the “Four Criteria” fail in these cases?
In Cases A and B clinicians feared that imposing treatment would infringe the autonomy of patients who, in fact, lacked capacity. In essence, clinicians afforded these two people the rights of autonomy (to demand neglect) when in fact their lack of capacity meant that they did not have autonomy anyway. This both caused and enabled poor clinical care. Case C’s treatment refusal could easily be seen as an autonomous desire to preserve access to health services by others. Or perhaps she simply feared hospital and had misperceptions about the opportunities it can bring. Had her refusal been accepted, then she might have suffered severe chronic disability.
Some will argue that A and B merely represent a reluctance to deliver the best care in difficult circumstances and that C represents the right of a person to choose. Fear of breaking the law on medical consent might increase the reluctance to treat. So a robust intolerance of poor care is needed to override autonomy. It is very easy to say that a proper assessment of autonomy would sort all this out, but although both A and B clearly had mental illness, the mental capacity assessments are complex. Assessment certainly did not lead to a shared conclusion among clinicians that treatment should be imposed. Furthermore, if autonomy is an overriding principle then complex determinations of capacity become essential. Many (like ambulance people, district nurses) are less well equipped to do these.
Many clinicians will recognise that in these situations, assessment of capacity is far more complex than the simple realities suggested by its definition.
A and B both believed treatment would not help. C perceived the “costs” of hospital admission as too big. In all these cases medical opinion disagreed with patients' strong convictions. And yet, the outcome of non-treatment in these three people was clearly beneficence in the short term but equally clearly harm in the long run. Compassionate, honest doctors must take a long term view and decide if a patient’s refusal of treatment now might lead to unintended harm later.
Non-maleficence is a difficult criterion. All treatments cause harm (and chemotherapy is a good example of this). Therefore no treatment is truly non-maleficient. But in the presented cases, harm avoidance was a useful way of justifying neglect. While unlikely to be used to prevent chemotherapy of the relatively healthy, harm avoidance can be used as an excuse not to treat the very sick or frail. In the context of the view that opiates may shorten life, non-maleficence might be used as a reason to avoid adequate analgesia in a dying person. Thus the patient is left to suffer by a doctor who does nothing.
In all three cases it could be argued that causing harm was avoided by inaction. Fear of being sued for assault can also cause the patient to be left to suffer. I have been called to several such emergencies. Surely, the criterion of good clinical care having regard for benefits and likely burden provides a better yardstick in cases such as these.
Justice in the Beauchamp and Childress criteria refers to equal access to care for all patients. Limited resources are sometimes allocated on “social worth” or likelihood of investment return. In one sense, this conflates analysis of patient benefit with cost to society and may avoid requiring honesty about why care is refused. Alternatively, falsely according autonomy to a vulnerable patient makes that patient responsible for refusing care.
Alarmingly, for the clinicians who were permitting neglect in the cases set out, documenting autonomy gave legal defence for the injustice observed.
The need for an alternative model.
There are therefore a number of difficulties with the current model of decision making used in medical ethics. Firstly, if autonomy is a preeminent criterion, those who lack autonomy appear to be bound to suffer. Secondly an appearance of autonomy in someone who lacks capacity can be easily subverted into justification of neglect. Thirdly while the principle of beneficence is ambiguous, non-maleficence and distributive justice can again be used to justify non-treatment in disadvantaged people.
We must therefore work to support the right to access appropriate treatment of vulnerable people. Access to treatment when the patient is mentally incapable should be promoted to a status in which this right becomes as difficult to challenge in real life as the right to refuse such treatment when a capable person requests it. Therefore the four principles of Beauchamp and Childress should be subject to review by higher principles listed below:
Good, evidence based, clinical care
Good clinical care demanded effective and reasonable treatment for all three. It was obvious that leaving them as they were was poor care. Prioritisation of good care as a fundamental principle would go a long way to reducing the errors seen in these cases.
When we cannot treat, for whatever reason (even lack of resources), we must be honest about this. The requirement to be open about the failure to provide treatment should have provided a powerful reason not to accept poor care
Compassion and respect
In all 3 cases, non-treatment was a demonstrable failure of both compassion and respect, both of which require motivation and determination to see the best care for the patient. This is central to the doctor-patient relationship. At the same time, compassion would be a good model to justify the avoidance of excessively burdensome treatments.
We might well use our medical vocation to see the person as our own relative (mother, father) and wanting the best outcome for them. We need to be able to see each person as the patient they could be if treated. We should bear in mind the image of them when recovering, rather than the image they present with when sick.
Strengths and limitations of the model
This model would help to reduce harm caused by adherence to the four principles. By subsuming non-maleficence and beneficence into “Good Clinical Care,” decision making becomes more patient-centred. The model may also reduce neglect caused by clinicians fearing punishment for infringing autonomy when, in all honesty, the patient risks neglect.
This model may appear paternalistic. But I believe that paternalism is sometimes necessary, tempered primarily by recognition of the limitations and burdens of treatments. In the absence of some paternalism, we risk merely accepting the neglect of the sick and vulnerable who resist care. Of course doctors frequently fail by giving ineffective or burdensome care. But the remedy for such measured paternalism is further honesty (and indeed humility) about medicine's limitations. Those who cannot choose must receive good treatment. The use of autonomy to excuse bad care should not be tolerable.
- Beauchamp, T.L., Childress, T.F. (1994). Principles of biomedical ethics [4th ed.]. New York: Oxford University Press
- Gillon, R. (2003). Ethics needs principles—four can encompass the rest—and respect for autonomy should be "first among equals" J. Med. Ethics; 29; 307-312 doi:10.1136/jme.29.5.307
Dr Adrian Treloar, FRCP, MRCPsych, MRCGP, Consultant and Clinical Director in Old Age Psychiatry