Advance decisions and planning for death

The case in 2017 of Charlie Gard, a very seriously ill baby whose parents fought in the courts against the medical decision that he should be allowed to die, highlighted the ethical dilemmas and difficult decisions that doctors as well as relatives face on a daily basis.

The work of doctors and other healthcare professionals always has to start from a presumption in favour of prolonging life. However, there is no absolute obligation on them to do so irrespective of the consequences for the patient, and this can lead to decisions being made either to withhold or withdraw treatment, in the knowledge that the decision may shorten the patient’s life. The law makes a distinction between deciding to withhold/withdraw treatment and deliberately taking action to shorten life, which is illegal (see the section on assisted dying).

A patient who has capacity to make his or her own decisions also has the right to refuse treatment, even if the doctor disagrees, although no right to demand a particular therapy. Decisions over some painful or invasive treatments may involve balancing length of life against quality of life, and medical professionals should always seek to enable a patient to make a fully-informed decision.

Where a patient lacks capacity to make decisions about their own treatment, the law places in the hands of the doctor the responsibility for making a decision whether or not to commence or continue a treatment. In such cases, the decision must be based on an assessment of the overall benefit to the patient, a key term. There is arguably much public misunderstanding of this point: next of kin or other relatives do not automatically have the right or obligation to decide on the patient’s behalf, the decision rests with the medical profession. Doctors will however seek to discuss the choice of action with those close to a patient who lacks capacity, just as they will discuss treatment options with a patient who has capacity.

As mentioned, a patient with capacity has a right to refuse treatment, whether in general or specific interventions. There are two circumstances in which this right can be exercised or passed to another person in the case of a patient without capacity to decide for themselves:

  • If the patient has made an advance decision (AD) – sometimes loosely known as a ‘living will’ – that they do not want to receive certain treatments. Commonly this may be CPR but it can specify any particular treatment, eg intubation, renal support, or the use of antibiotics
  • If the patient has signed a Lasting Power of Attorney (LPA) for health and welfare, appointing someone else to make decisions on their behalf. While more flexible, this places a huge responsibility on that person which is one reason why some prefer to make an AD.

It is vital that, if either of these options is being considered, the correct wording should be used to ensure that the AD or LPA will be valid.  The document also needs to be shared in advance so that others are aware of its existence. For help with drawing up such documents, see the links below.

Preparing an AD or LPA is of course just one aspect of preparing for death. Another obvious practical step, and an essential one, is to prepare a will and review it from time to time.

Beyond that, there are many things that a person with a life-shortening condition may wish to do, such as discussing their funeral with their relatives, friends or a minister, seeing people “for the last time”, praying with those they love, considering organ or tissue donation, or planning and talking to others about how they hope to be cared for in their last days. None of these may be easy to do or talk about, and none will be helped if family and friends push the subject away by saying things like “Don’t be silly, you’re not going to die”. We all shall.

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