Advance Decisions (Living Wills)

From time to time church leaders have people in their congregation who will look to them for advice on making choices and decisions about medical treatment and especially future treatments when death is near or personal mental capacity has failed. Such advice should only be given in consultation with family and those who may have care of the person asking for advice. This short article follows on from the previous article on Lasting Powers of Attorney (The Bulletin Issue 35, July 2017) and looks at other options.

If someone is unwell they will normally discuss their treatment with their doctor and come to an agreement about what options they should take. It is often at this time that the pastor/elder/church leader may well be consulted. But sometimes, because of the seriousness of their illness, or because they are unconscious, or because they have limited intellectual powers, it is not possible for that person to make a decision. To mitigate that situation it is possible to do one of three things:

1. Make and register a Lasting Power of Attorney for health and care decisions;
2. Make an Advance Decision to refuse treatment under specified conditions (these are sometimes referred to as Living Wills);
3. Prepare an Advance Statement of wishes and care preferences that will inform others of what is wanted and so that can be taken into consideration.

Advanced Care Planning is a term used to describe a conversation between a person, their family and care-givers, and professionals involved in their care. The whole process is covered in England and Wales by the Mental Capacity Act 2005. In Scotland and Northern Ireland the situation is different; in Scotland the relevant legislation is the Adults with Incapacity (Scotland) Act 2000. Advance Decisions are governed by common law rather than legislation, although the definition and determination of mental capacity is covered by the relevant acts of Parliament.

An Advance Decision to refuse treatment allows someone who has mental capacity to make a decision about medical treatment(s) they would want to refuse should they be deemed to need such treatment in the future and by that time lack ‘mental capacity’ to decide and/or express their own wishes. An Advance Decision does not need to be in writing in most cases. However, if that person wishes to refuse life-sustaining treatment, it must be in writing – signed and witnessed – and state clearly that it must apply, even if life is at risk. 

An Advance Statement allows someone to make more general statements, describing their wishes and preferences about future care should the situation arise that they cannot make or communicate a decision or express a preference at the time. This statement will often reflect religious beliefs and personal values that the person holds. It can include things such as food and drink preferences; type of clothes to wear; music, TV or DVD to be played or toiletry preferences. It may also state who should be allowed to visit, and who should be consulted about care. It is helpful to write such information down. If a Lasting Power of Attorney (LPA) of health and care decisions is being created the existence of an Advance Statement should be stated. An Advance Statement is not legally binding but should be taken into account by those making decisions in the best interest of the person.

A person may record their wishes in an Advance Decision, or in an Advance Statement or in both. There are as many reasons for doing this as there are for making a will. It certainly gives peace of mind to people, especially if they have a life-limiting condition. It also gives peace of mind and confidence about the future to family and those who may have to make decisions on the person’s behalf. 

It is, of course, not necessary to make an Advance Decision. It can be left to whatever medical staff are undertaking care to decide what is in the patient’s best interests. In deciding on what is in the best interests of the patient a doctor should take account of evidence of beliefs and past wishes and talk to family, friends and carers where appropriate.

In order to make an Advance Decision the person must be aged 18 or over and have the mental capacity to make such choices about treatment. For most people, there is no doubt about their capacity to do so. If there are concerns about mental capacity, two simple questions are asked:

1. Do they have an impairment of the mind or brain, or is there some sort of disturbance affecting the way their mind or brain works?
2. If so, does that impairment or disturbance mean they are unable to make the decision in question at the time it needs to be made after all practical and appropriate support to help them make the decision has been tried?

Answering ‘yes’ to both questions and recording the basis of that conclusion would support a reasonable belief that someone ‘lacks capacity’ to make treatment decisions.

An Advance Decision cannot be used to refuse basic care that is essential to keep you comfortable, such as nursing care, pain relief or keeping you warm. Nor can it be used to refuse the offer of food or drink by mouth. Obviously, it also cannot be used to ask for anything that is against the law such as euthanasia or help to take your own life; it is a decision not to have certain treatments rather than a request for specific treatments.

It is not necessary to involve a doctor or a solicitor in making an Advance Decision. If, however, the person has a life-limiting condition, or even a terminal condition, then consultation with doctors is the wisest thing to do. Certainly, every effort should be made to encourage people to consult a solicitor.

An Advance Decision only needs to be in writing if you want to refuse life-sustaining treatment. Putting it in writing and getting the doctor to record the fact in medical notes avoids uncertainty. There is no dedicated form to use if you want to put an Advance Decision in writing, but there are a number of firms offering forms, especially on the internet. That is why it is far better to involve a solicitor.

Life-sustaining treatment is described as ‘treatment that, in the view of the person providing health care to the person concerned, is necessary to sustain their life’. If, subsequent to making an Advance Decision, the person decides to add a refusal of life-sustaining treatment that decision must recorded in writing and signed and dated it in the presence of a witness, who must also sign it.

If an Advance Decision is prepared according to the requirements of the Act, it is legally binding and medical professionals must follow it, regardless of whether they believe it is in the best interests of the patient. They must be aware that the Advance Decision exists, is valid and applies to the situation. Doctors must also be sure the person has not withdrawn it or clearly said or done something that goes against it which would suggest they have changed their mind. It is at this point that difficulties can arise and church leaders have found believers undergoing treatment to which they know the person would have objected. Great care should be taken to ensure medical staff know the Advance Decision exists and what its terms are.

An Advance Decision can be cancelled at any time while there is capacity to do so. There is no formal process. Tell everyone who knows there is an Advance Decision that it has been cancelled and put this in writing to avoid uncertainty. Healthcare professionals should record any verbal cancellation in the person’s records for future reference. This may seem a mundane matter, but it is an issue that can cause great distress if not handled properly.

 

Roger Hitchings retired in 2011 from the pastorate. Previously he worked for 23 years in the field of social welfare with a particular emphasis on older people, and continues with that area of interest through writing and speaking.

(This article was originally published in the Affinity Social Issues Bulletin for March 2018.)