Are there limits to a patient’s autonomy in making health care decisions?

This is a question healthcare professionals have to answer almost every day. As they work with patients and families who are making healthcare decisions, the goal is to move care in the right direction. How much control should patients have over their healthcare choices? Isn’t the answer obvious? The most intuitive answer would be ‘as much control as possible.’ Why would a patient not want to have control over his or her healthcare decisions?  When might a patient not be able to fully control their care choices?

The ethical principle of autonomy, which has many definitions, is highly valued in personal healthcare decision-making. Autonomy should be considered when it has features which relate to people, self determination or self governance, all of which are relevant to making healthcare decisions.

Two concepts will assist in answering our question. First, to be autonomous (literally a self-lawmaker), an individual must have adequate knowledge to explore and examine all options relevant to the healthcare decision that needs to be made.

This specialized knowledge is beyond the scope of most patients, so they must rely on healthcare professionals to present them with the information they lack (often in a simplified version). Patients may be quite knowledgeable about their illness, but they usually do not know the whole story.

Even a physician who becomes a patient may lose objectivity about specific details of treatment. It is the obligation of the healthcare professional who is proposing treatment to provide the relevant information that is needed to enable the patient to make an informed decision.

Second, the patient is often in an impaired state that makes fully deliberative decision-making difficult at best. The patient could be in pain, emotionally traumatized or in some way not up to making a fully unemotional, rational decision.  The ability to give informed consent may be impaired by illness, denial and multiple factors. In such instances, care must be taken that teams do not revert to the old standard of deeming a patient incapable if they do not agree with their health team’s plan of care. The team is obligated to facilitate a patient’s decision-making and involvement in medical treatment, enhancing their dignity. Concisely, the healthcare team should always invite and encourage the patient’s participation.

Now, getting to the extent of autonomy: autonomy is limited when its exercise causes harm to someone else or may harm the patient. When harm to others is sufficiently grave, it overrides the principle of autonomy. In some cases, the team may not be able to fully respect autonomous decisions. Furthermore, autonomy is limited when its exercise violates the physician’s/healthcare team’s medical conscience.

For example, if a patient wants antibiotics for a viral infection or renal dialysis for urinary incontinence, the physician will refuse because antibiotics don’t fight viruses and dialysis doesn’t treat incontinence. At the same time, there are potentially negative consequences for these treatments. Sometimes, if a patient makes a decision that causes moral distress within the team, it might be necessary to determine whether the patient appreciates the extent or full implications of their decision.

While it is quite correct to say that in some circumstances, other considerations take precedence over the wishes of individuals (for instance, if a person has ‘irrational’ desires or if they will cause avoidable harm to others), autonomy should be thought of more broadly. Patient wellbeing and autonomy go hand-in-hand. Autonomy should not necessarily be seen as ‘patient control of decision-making,’ but as a clinical reality which consists of education, conversation and concern for patient wellbeing.

It is helpful for healthcare professionals to think of autonomy, not as a disembodied principle or as something that is entirely lost if a right to choose is denied, but rather as a matter of the degree to which it is honoured, aimed at providing respectful patient care. The implication is that once information relevant to treatment is made available and the patient is deemed capable of making treatment decisions, then the healthcare professionals proposing treatment should not prevent the patient’s choice unless respecting the wishes would cause harm to others, or seriously undermine the patient’s wellbeing.

Fundamentally, autonomy is the pivotal healthcare notion.  Consideration for (in the broadest sense) must always be the starting point for interventions that seek to enhance patients’ dignity.

Beyond this, the issues must be resolved using appropriate moral reasoning, clear communication, comprehensive assessment of the situation, respect empathy and personal judgement.

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