Patients have the right to refuse treatment but not to demand it under any circumstances. Dr Gerard Panting considers the GMC guidance on this complex issue
End of life decisions are among the most difficult facing patients, their doctors and carers.When is enough enough? How should treatment decisions be weighed against patient autonomy? The law has become more complex over recent years, which in itself can mitigate against patient care. So how should doctors approach these difficult and emotionally charged situations?
In August 2002,the GMC published its guidance on the subject,Withholding and withdrawing life-prolonging treatments: good practice in decision-making.1 It addresses the guiding principles, the good practice framework and areas for special consideration such as children, artificial nutrition and hydration, and cardiopulmonary resuscitation.
That guidance has, however, been challenged by Oliver Burke, a 45 year old patient suffering from spinocerebellar ataxia. In July this year, the Court of Appeal confirmed that the GMC guidance was lawful, but Mr Burke has announced his intention to go to the House of Lords in the hope of overturning the appeal court’s decision. Unless Mr Burke is successful, the GMC guidance stands.
Artificial nutrition and hydration
The subject of artificial nutrition and hydration (ANH) lay at the centre of Mr Burke’s challenge against the GMC guidance. Patients unable to eat or drink normally might experience distressing symptoms and complications if their needs for nutrition and hydration are not being met.
However, it is recognised that attempts to provide ANH may themselves cause avoidable suffering. For the healthcare team and relatives, there may be emotional difficulties in deciding not to provide for the patient’s basic needs.
Mr Burke’s concern was that when he could no longer communicate his wishes, doctors would decide that his quality of life was too poor to continue ANH and that he would not die of natural causes but of starvation and thirst.
This, he contended, was a breach of the Human Rights Act and that the GMC guidance was unlawful for failing to protect those rights.
The Court of Appeal found that while competent patients have a paramount right to refuse treatment, "Autonomy and the right of selfdetermination does not entitle the patient to insist on receiving a particular medical treatment regardless of the nature of the treatment. Insofar as a doctor has a legal obligation to provide treatment this cannot be founded simply upon the fact the patient demands it".2 In considering the general position, the Court of Appeal endorsed the principles advanced by the GMC:
(i) The doctor exercising his professional clinical judgment decides what treatment options are clinically indicated (i.e. will provide overall clinical benefit) for his patient
(ii) He then offers those treatment options to the patient in the course of which he explains to him/her the risks, benefits, side effects, etc. involved in each of the treatment options
(iii) The patient then decides whether he wishes to accept any of those treatment options and, if so, which one. In the vast majority of cases, he will, of course, decide which treatment option he considers to be in his best interests and, in doing so, he will or may take into account other, non-clinical, factors. However, he can, if he wishes, decide to accept (or refuse) the treatment option on the basis of reasons which are irrational or for no reasons at all
(iv) If he chooses one of the treatment options offered to him, the doctor will then proceed to provide it
(v) If, however, he refuses all of the treatment options offered to him and instead informs the doctor that he wants a form of treatment which the doctor has not offered him, the doctor will, no doubt, discuss that form of treatment with him (assuming that it is a form of treatment known to him) but if the doctor concludes that this treatment is not clinically indicated he is not required (i.e. he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.2
The GMC starts its guidance with the statement that doctors have a responsibility to make the care of their patients their first concern.The guidance identifies the main questions that may arise.These are:
(i) Whether the ethical principle requiring doctors to show respect for human life would mean that doctors should offer all means at their disposal to prolong a patient’s life? Or would it allow for the possibility of withholding or withdrawing a life-prolonging treatment?
(ii) Are there circumstances in which withholding or withdrawing life-prolonging treatment would be unlawful?
(iii) What are the responsibilities in the decision-making process of the patient, doctor, healthcare team, family members and other people who are close to the patient? And what weight should be given to their views?.1
In essence, the answer to the first question, the doctor’s responsibility is to offer treatments where the possible benefits outweigh the associated burdens and risks and avoid treatments where there is no benefit to the patient. However, in making this assessment, doctors should look beyond purely medical considerations, weighing in the balance other factors relevant to the patient’s circumstances, and so allowing the possibility of withholding or withdrawing life-prolonging treatment.
In answer to the second question, there are undoubtedly circumstances in which withholding or withdrawing life-prolonging treatment would be unlawful. Specifically referring to the provision of ANH the Court of Appeal said:
So far as ANH is concerned, there is no need to look far for the duty to provide this. Once a patient is accepted into a hospital, the medical staff come under a positive duty at common law to care for the patient. ... A fundamental aspect of this positive duty of care is a duty to take such steps as are reasonable to keep the patient alive.
Where ANH is necessary to keep the patient alive, the duty of care will normally require the doctors to supply ANH.This duty will not, however, override the competent patient’s wish not to receive ANH. Where the competent patient makes it plain that he or she wishes to be kept alive by ANH, this will not be the source of the duty to provide it. The patient’s wish will merely underscore that duty.
Insofar as the law has recognised that the duty to keep the patient alive by administering ANH or other life-prolonging treatment is not absolute, the exceptions have been restricted to the following situations:
(i) Where the competent patient refuses to receive ANH, and
(ii) where the patient is not competent and it is not considered to be in the best interests of the patient to be artificially kept alive.
But ... it seems to us that for a doctor deliberately to interrupt life-prolonging treatment in the face of a competent patient’s expressed wish to be kept alive, with the intention of thereby terminating the patient’s life, would leave the doctor with no answer to a charge of murder.2
When it comes to the decisionmaking process, the guidance makes it clear that the responsibility for decision-making lies with the consultant or general practitioner in charge of that patient’s care. However, the decision should be informed by the wishes of the patient with the opinions of family members and other people close to the patient taken into account.
Adult patients who are competent have the right to decide for themselves what treatment to accept or reject.They have a clear legal right to refuse treatment even where this may result in significant harm or death and doctors cannot overrule that decision.
Patients can refuse a treatment but, as Lord Phillips said in the Court of Appeal, "A patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient’s clinical needs.2
The authority of a valid advance refusal of treatment is now enshrined in statute (Mental Capacity Act 2005). Should a patient make an advance refusal of treatment, that decision is legally binding on the treating healthcare team, provided it is clearly applicable to the patient’s present circumstances, and where there is no reason to believe that the patient has changed his or her mind.
However, where a doctor is treating a patient who has become incompetent and where there is no-one else authorised to make the treatment decisions and the patient’s wishes are not known, the responsibility lies with the doctor to decide what is in the patient’s best interests, taking all relevant factors into consideration.
The GMC advises:
... It is essential that doctors ensure that those involved in making the decision are provided with clear and up to date information about what is known of the benefits, burdens and risks of providing nutrition and hydration through artificial means, and information about the basis on which the particular patient’s needs have been assessed.1
- General Medical Council. Withholding and withdrawing life-prolonging treatments: good practice in decision-making. London: GMC, 2002.
- R (on the application of Burke) v General Medical Council. EWCA Civ 1003.