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Ethical Issues - Consent

Issues that may present to a CEC

  • A competent patient refuses treatment
  • An incompetent patient refuses treatment

The following worked examples of hypothetical case studies show how ethical principles would apply to practical problems.

A competent patient refuses treatment

Mrs Xis 35 and is in need of dialysis. She is refusing treatment because she is scared of the treatment which she believes is invasive. She has been counseled about the nature of the treatment - there are no alternatives that would be of practical benefit. She is competent to make treatment decisions. She understands that if she refuses dialysis she will die. She has a daughter of 15 years who lives at home. The clinician feels very strongly that she should receive dialysis but despite numerous attempts to persuade her she refuses.

Can the clinician treat her?

Issues that a clinical ethics committee / group may consider:

Mrs X is competent and so has autonomy to make treatment decisions. If the principle of respect for autonomy is given the highest value then her refusal should be respected despite the resulting harm. It is clear that she considers invasive long term treatment not to be in her best interests.

It is important however that Mrs X is making an informed and voluntary decision - a decision made in ignorance could not be said to be an autonomous one (although arguably a patient makes an autonomous choice if he delegates his decision to the clinician/ healthcare professional). Mrs X has received dialysis counseling but she still believes it to be invasive. Could more be done to inform her - perhaps she could be taken around a dialysis ward? Are some types of dialysis less invasive or more acceptable to Mrs X? Can a compromise be reached? If she has been sufficiently informed then does she need to make an objectively ‘rational’ decision? This seems unduly paternalistic and not respectful of autonomy which is the expression of individual wishes. However it is important to consider whether an irrational fear, for example of needles, might be interfering with her free choice in this matter. Any causes of coercion should be identified and where possible steps taken to alleviate these.

The clinician may feel that he is not protecting his patient from harm or acting in her best interests if he allows her to die for lack of dialysis. But forced dialysis will also be harmful to Mrs X. In addition, to what extent are the interests of Mrs X’s daughter to be considered? Her exercise of autonomy has enormous repercussions for her daughter - has she been involved in discussions / expressed a view?

If Mrs X has capacity her refusal must be respected - otherwise a battery may be committed. If through lack of treatment her condition deteriorates and she becomes incompetent through illness, then her previously expressed wishes, made when competent, should be respected. If she really does not want treatment even if this results in her death she should be encouraged to complete an advance refusal of treatment.

An incompetent patient refuses treatment

Mrs Y is 56 years old. She has a learning disability and lives in a care home. She is admitted to hospital with an ovarian cyst. The cyst is blocking her ureter and if left untreated will result in renal failure. Mrs Y would need an operation to remove the cyst. Mrs Y has indicated quite clearly that she does not want a needle inserted for the anaesthetic for the operation to remove the cyst - she is uncomfortable in a hospital setting and is frightened of needles.

The clinician is concerned that if the cyst is not removed Mrs Y will develop renal failure and require dialysis which would involve the regular use of needles and be very difficult to carry out given her fear of needles and discomfort with hospitals. The anaesthetist is concerned that if Mrs Y does not comply with the procedure then she would need to be physically restrained. Mrs Y’s niece visits her in the care home every other month. The niece is adamant that her aunt should receive treatment.

Should the surgeon perform the operation despite Mrs Y’s objections?

Issues that the clinical ethics committee may consider:

An initial step may be to clarify all the facts in the case, for example does Mrs Y have any understanding of the risks of not having this treatment? Her learning disability means that she is unlikely to be competent to consent or refuse the operation, but an attempt should be made to explain to her, in terms that she could understand, what the treatment would involve and what the outcome would be without treatment. Have alternative forms of anaesthetic and ameliorating strategies such as local anaesthetic cream or a sedative drink prior to injection been discussed? Has her autonomy been enhanced as much as is possible? If the conclusion is that she is unable to understand the consequences of non treatment, or that her fear of needles is stopping her evaluating the risks, then she will not be competent to make a decision. However, this does not mean that her fears and concerns should not be acknowledged.

The consequences of the various courses of action need to be considered. If she is not treated then she is likely to develop renal failure. Dialysis would cause her repeated distress as it is an ongoing treatment. If dialysis cannot be maintained she will die. Treatment will involve some degree of force or deception, which could cause increased distress, possible physical harm, and have long term effects on her future cooperation with health care professionals. A balancing of the harms and benefits of the various options is required to determine what would be in Mrs Y’s best interests. In this case, in view of the serious and prolonged harm of not treating her, and the circumscribed nature of the harm of treatment, it would seem to be in her best interests to be treated. If dialysis is the proposed treatment the balance of harms and benefits may be such that treatment would not be in her best interests if it causes severe distress on a regular basis such that her life is intolerable. If the decision is to perform the operation on Mrs Y, then once again respect for her wishes and concerns should influence the approach to treatment so that her fears are mitigated as much as possible.

This approach reflects that it would not be ethical simply to assess Mrs Y as incompetent and then proceed to treatment in the most convenient manner for the health professionals without regard for Mrs Y as a person.

The views of Mrs Y’s niece should be acknowledged but they can only be given weight in the decision if they contribute to the assessment of what would be in her best interests. Legally, no person can give consent or refuse treatment on behalf of another adult unless they have been given Lasting Power of Attorney.