Everyone wants choice and control over their lives, especially when they are seriously ill, worried about long-term illness, or when age is taking its toll.
Comfort can be found by preparing an Advance Decision, setting out decisions about possible future treatment, in particular where there is a specific diagnosis and the likely future treatment is understood. This is especially relevant for those living with a terminal illness, such as neurodegenerative conditions such as multiple sclerosis or motor neurone disease, cancer, heart or respiratory failure, or kidney and liver failure.
When preparing a Will, most individuals also prepare Lasting Powers of Attorney to appoint a friend or family member to make decisions on their behalf if they lose capacity. Far fewer people set out their views on future treatment in an advance decisions.In situations where friends and family have expressed doubts about you refusing treatment advance decisions are particularly useful, helping to allay any family differences regarding your treatment.
It is a general principle of law and medical practice that people have the right to consent to or refuse treatment, even if they lose capacity in the future, and even if this results in their death. It is therefore important to consider preparing both Advance Decisions, supported by advance statements, as well as Health and Welfare Lasting Powers of Attorney, which give named attorneys the power to make decisions, particularly on issues which are not covered by the Advance Decision and Advance Statement.
An Advance Decision (also known as a Living Will, or advance decision to refuse treatment) is a legal document in which you specify what actions should be taken for your health if you are no longer able to make decisions for yourself because of incapacity. It enables you to decide which specific treatments you would want to be refused in the future. When accompanied by an Advance Statement, it ensures that friends and family have clear information about your wishes.
An Advance Decision will only be used if, at some time in the future, you are not able to make your own decisions about your treatment. As long as the Advance Decision is valid and applies to your situation, it gives your health and social care team clinical and legal instructions about your treatment choices. For an Advance Decision to be valid it must be specific about the treatment that is being refused and the circumstances in which the refusal will apply.
Careful thought needs to be given to the decisions you make in an Advance Decision. Examples include refusing the use of burdensome medical treatment, or foregoing of food and water if supplied via tubes or other medical devices, in some cases this treatment could potentially keep you alive (known as life-sustaining treatment). More specific Advance Decisions may include information regarding your wish for services such as pain relief, antibiotics, hydration, feeding, and the use of ventilators. Alternatively you may want to refuse a treatment in some situations, but not others, in which case you need to be clear about all the circumstances which are applicable and at what phase of your illness you would wish the Advance Decision to come into effect.
It is not possible under an Advanced Decision to specify what treatment you do want or to ask for treatment, or someone to help you, to end your life. Euthanasia and assisted suicide are illegal under English law.
An Advance Statement is a written statement which accompanies an Advanced Decision setting out your preferences, wishes, beliefs and values regarding your future care. The aim is to put the Advance Decision into the context of your life and to provide a guide to anyone who might have to make decisions in your best interest if you have lost the capacity to make decisions or to communicate them.
An Advance Statement can cover any aspect of your lifestyle, values, beliefs and future health or social care. This could include:
- How you want any religious or spiritual beliefs you hold to be reflected in your care;
- Where you would like to be cared for (for example, at home or in a hospital, a nursing home, or a hospice);
- Your personal care and how you like to do things (for example, if you prefer a shower instead of a bath, or like to sleep with the light on); and
- Concerns about practical issues (for example, who will look after your dog if you become ill).
An Advance Statement is not legally binding, it is persuasive only, but anyone who is making decisions about your care must take it into account and must consult with individuals named in the Advance Decision or Advance Statement.
Before preparing an Advance Decision and an Advance Statement, we recommend that you discuss your possible treatments and the different clinical circumstances with your GP or other relevant consultant or healthcare professionals who are closely involved with your care and who know your medical history. This ensures that you have all the relevant knowledge about the kinds of treatments you might be offered in the future and what it might mean if you choose not to have them. Once the paperwork is complete it is prudent to ensure that your family, carers and health and social care professionals know about it, and know where to find it. A copy should also be kept in your medical records.
The relationship between the Advance Decision and a Health and Welfare Lasting Power of Attorney (‘H&W LPA’) is complex and there are good reasons to create both. However, care needs to be taken that they are prepared in the correct order so as not to invalidate the Advance Decision.
If you are interested in preparing a personalised Advance Decision and an accompanying Advanced Statement or you wish to discuss any other aspect of this article please contact our private client department on: 01392 210 700 or email@example.com.