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When patients lack capacity

So far, we have only covered consent as it applies to adults with decisional capacity. For patients who lack decisional capacity (children who are too young to understand, and adults with a mental impairment that prevents them from understanding), a proxy may consent on their behalf.

When an adult patient lacks the decisional capacity to consent to a proposed intervention, substitutes may be referred to, in the following order of precedence:

  1. An advance directive (see page 16) made when the patient had decisional capacity. A valid advance directive that applies to the circumstances must be honoured, unless there is good reason to believe that the patient changed his or her mind.
  2. A proxy mandated in writing by the patient to make decisions on his or her behalf.
  3. A person authorised by law or a court order.
  4. The patient’s spouse or partner.
  5. Parent.
  6. Grandparent.
  7. Adult child.
  8. Brother or sister.
When an adult patient lacks the decisional capacity to consent to a proposed intervention, substitutes may be referred to

Emergencies

The only exception to obtaining consent from a valid substitute is in an emergency. If delay would result in serious harm to the patient, you should act in the best interests of the patient. Legal action against doctors providing treatment without consent in an emergency is extremely rare. In genuine emergencies, do not hesitate to provide immediately necessary treatment unless there are clear indications that the patient would object to the treatment.

Children

Where children are concerned, the consent of the parent or legal guardian is required for children who are either under the age of 12 or who lack the decisional capacity to make the decision before them. If the treatment entails a surgical procedure, the child’s consent must be supported by a parent’s written assent.

If there are two people with parental responsibility, it is usually sufficient for one of them to give consent, but where decisions may have profound, irreversible consequences, both of them should be consulted where practicable

In practice, it is reasonable to seek the consent of any minor with the capacity to understand the nature and implications of the proposed treatment or procedure, regardless of age. This should not present a problem if the child and parents are in accord about a decision to consent to treatment.

If there are two people with parental responsibility, it is usually sufficient for one of them to give consent, but where decisions may have profound, irreversible consequences, both of them should be consulted where practicable. (See Consent to Medical Treatment in South Africa. An MPS Guide for more detailed information about consent issues regarding children, and for a guide to parental responsibility.)

“When adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account.”

(UNICEF, A summary of the Convention on the Rights of the Child, Article 12)

End of life decisions

When patients are seriously ill and lack the decisional capacity to make medical decisions on their own behalf, healthcare professionals are obliged to make treatment decisions in the patient’s best interests. This might include choosing not to intervene if a treatment or procedure would be burdensome and with little benefit to the patient.

Not all terminally ill patients lose their decisional capacity, and in this case the same principle applies as with treatment for all competent adults – healthcare professionals should respect and – as far as possible – comply with the patient’s wishes.

There are, however, limits to this obligation. Firstly, healthcare professionals are expressly forbidden – by medical ethics and the law – from honouring a patient’s or family’s request to intentionally hasten the patient’s death.

Conversely, the Council states that healthcare professionals are not obliged to comply with requests to continue treatment that they consider futile. In this situation, it advises giving the patient or family the choice of transferring to another institution where the treatment is available. If they refuse, and the futility of the treatment is confirmed by an independent healthcare practitioner, the health team may withhold or withdraw the treatment.2

The Council states that healthcare professionals are not obliged to comply with requests to continue treatment that they consider futile

Do Not Resuscitate (DNR) orders

The decision not to institute CPR if it is likely to be successful should not be taken lightly, or in isolation. If the patient is competent, he or she should be involved in the decision-making, as should the family (with the patient’s consent). Ideally, the whole healthcare team should also be consulted. Ultimately, though, the decision rests with the senior clinician in charge of the patient’s care.3

Such decisions should not be made on the basis of assumptions about the patient’s age, condition or perceived quality of life, but on a clinical assessment of the potential benefits and burdens of resuscitation on the individual, taking into account what is known about the patient’s views, beliefs and wishes and those of his or her close relatives (see Box 6).

If a DNR order is made, this should be clearly documented in the patient’s notes, together with the reasons for the decision and the process of decision-making.4

Advance directives

An advance directive is a statement made by a competent adult in anticipation of a time in the future when he or she may lack the capacity to make healthcare decisions. Such statements usually take the form of advance refusal of specified treatments, but may also contain information about the patient’s values and beliefs.

The Council states that “Where a patient lacks the capacity to decide, health care practitioners must respect any valid advance refusal of treatment”.5

Patients should be given the opportunity to write a directive setting out their wishes regarding their future care to guide those who will be tasked with deciding what is in their best interests

It also recommends encouraging patients with terminal conditions to appoint a proxy to make decisions on their behalf in the event of their losing decisional capacity. Moreover, patients should be given the opportunity to write a directive setting out their wishes regarding their future care to guide those who will be tasked with deciding what is in their best interests.6

If there is any doubt about the validity or applicability of an advance decision (eg, there is reason to believe that the patient might have had a change of mind since drawing up the directive, or the current circumstances do not correspond to those specified in the directive), the patient should be provided with care to secure his/her best interests while the issue is resolved, if necessary by reference to the courts.

Documentation

All decisions to withdraw or withhold treatment, either with or without the patient’s consent, should be fully and clearly documented in the patient’s medical record and accessible by all those involved in the patient’s care.

Such documentation should include:

  • the relevant clinical findings
  • discussions with the patient and others
  • details of treatment or other significant factors which may affect future care.

Summary

In summary, when obtaining a patient’s consent:

  1. Take the patient’s particular circumstances into account when discussing options. The issues discussed should include the risks, benefits, cost and expected outcome of each option, including the option of doing nothing.
  2. Check the patient’s understanding. If the patient lacks decisional capacity, obtain it from someone whom the law recognises as a valid substitute.
  3. Be careful not to place the patient under pressure to choose a particular course of treatment. Be transparent about any financial interest you might have in a recommended healthcare facility.