End of Life healthcare
Here’s some further guidance on how best to document your preferred healthcare wishes particularly towards the end of your life. Giving consideration as to how you wish to be looked after, and who should be able to make health and welfare decisions on your behalf, is both important for you and for your family and friends, who may have to make difficult decisions for you.
Please note this document is for information purposes and we would advise that you seek medical and legal advice before creating legal documents such as Advanced Decisions and Health and Welfare Powers of Attorney.
You may also find it helpful, where you have a particular illness or disease to consult relevant support organizations, whose experience may inform decisions about future treatment choices
What is an Advanced Decision?
Advance decisions are most commonly made by people who are diagnosed with a terminal or degenerative illness, or who have particular personal beliefs (including religious and spiritual beliefs) that are relevant to their medical treatment. The benefit of making an Advance Decision is that your wishes in relation to medical treatment are more likely to be followed, particularly where those wishes include the refusal of one or more forms of life-sustaining treatment.
An Advance Decision (also referred to as an Advanced Decision to Refuse Treatment) protects the people you care about from having to make decisions to refuse treatments that keep you alive, such as specific medication, ventilation or CPR. It’s a document that sets out now what you’re going to want to happen in the future, either because you anticipate not being able to communicate effectively yourself, or because it’ll be possible your mental capacity to make those decisions could have been diminished.
Who can make a Decision?
Some conditions and illnesses can restrict our ability to express ourselves through communication, while others involve our mental capacity changing as they progress. Legally, the term mental capacity to make any decision requires that we (a) understand information about the decisions we’re making, (b) remember that information, (c) think about the information as we make decisions, and (d) can communicate our decisions through speech, sign-language, or other methods. It’s worth speaking to your doctor and family about making an Advanced Decision, but if you’re mentally fit to do so, and you’re over 18, you can make one, and they should be reviewed regularly to incorporate changes.
How do you make a Decision?
There are lots of resources available through the NHS and other organisations about Advanced Decisions, but by their nature, they’re personal to our own specific needs, beliefs and wishes. Whether there’s a family medical history that’s on your mind, or whether you’re dealing with a long-condition or a recent diagnosis, it’s best to discuss an Advanced Decision with your GP or medical team, in order to best understand what sort of interventions might be recommended later on, and the possible consequences of accepting or refusing them. You’ll then be able to anticipate different scenarios that are common to patients in those conditions, to make decisions about how they should be handled, and to protect those whose lives it’s going to have an impact on further down the line.
For example, in cases where all treatment options have been exhausted, it’s common for patients to be drip or tube-fed, or for antibiotics to be prescribed against infections. These aren’t necessarily specific to the primary condition, but are called life-sustaining measures, and they’re the sort of thing you would consider in an Advanced Decision.
It’s crucial that an Advanced Decision is clear and detailed so there isn’t any ambiguity or confusion when medical staff have to act upon it, so the more detail you can include on what exactly you want to refuse, and under what circumstances you want the Advanced Decision to apply, the better.
Making sure your Decision is valid
In the eventuality that it gets used, the legal aspect of mental capacity is critical in determining whether your Advanced Decision will be followed. YAn Advanced Decision must be written, must be clear about what treatments you’re refusing AND the circumstances, and it must acknowledge that you’ve given it due consideration and understand the consequences of applying it. It also needs to be signed and witnessed.
You should regularly review your Advance Decision in case of material changes (e.g., new medicines become available, you become pregnant, etc.) which could call the decision into question.
It’s important to note that you cannot use an Advance Decision to request or authorise illegal acts, including assisted suicide.
What to include:
Aside from the requirements above for the validity of an Advanced Decision, it’s best to include your details (name, address and any identifying features) in case medical staff need to identify you. You should give your GP or consultants details and whether they’ve been involved in, or have a copy of, your Advanced Decision. It must make it explicitly clear that it’s what you want to happen, even if your life is at risk as a result.
An Advanced Decision has to be applicable as well as legally valid. This means that you have to include as much specific information as you can, so that it will cover the circumstances you want it to. If it doesn’t, then it won’t apply. For example, if you set out that you want to refuse treatment for a progressing diagnosis of motor neurone disease, but then experience a stroke not related to the MND, the Advanced Decision would not be applicable. Likewise, it has to cover specific treatments that you don’t want used (e.g., Cardiopulmonary Resuscitation, artificial nutrition via drip or tube). Sometimes an Advanced Decision only covers CPR, and these are referred to as DNACPR decisions (Do Not Attempt Cardiopulmonary Resuscitation) or DNRs (Do Not Resuscitate), and these work in the same way to make sure that your health is managed on your terms.
It can be difficult to draft a comprehensive Advance Decisions covering all possible treatments that may be available and all relevant circumstances that may arise in the future. However, even if an Advance Decision is not applicable to a particular treatment or in a particular set of circumstances, it will still be of value as an expression of your values and beliefs, which will help family, friends and health professionals determine what treatments you may have chosen in the event you have lost capacity.
Sharing your Advanced Decision
There are two sides to sharing your Advanced Decision. First, medical staff should be involved in the discussions as you’re exploring options, and while you’re writing the document itself. They’re the ones who will help you understand what could lie ahead for you, and this informs whether or not you’ll want to accept treatment. You can also engage a solicitor to help with your Advanced Decision if you wish. Once it’s written, you should make sure that your GP, consultant or any other healthcare workers you’re involved with have a copy, or know it exists and where to find a copy.
You should also make sure that you talk the Advanced Decision through with anyone whose life this process is going to affect. Talking through your decision with those you care about will help them understand and accept your wishes.
Advanced Decision v Power of Attorney Heath
If you know that you’re going to become unable to make decisions later on, you can grant Lasting Power of Attorney (LPA) to someone you trust. A Health and Welfare LPA gives them the responsibility to make (or help to make) decisions about you, your welfare, daily routines, place of residence, and medical care. If you’re making an LPA and have an Advanced Decision as well, you should make sure that the LPA references it, and be clear that the LPA doesn’t give your attorney the right to make decisions about you accepting or refusing treatment, so the two legal documents aren’t in conflict. Alternatively, you can just have an LPA, but then your attorneys will be solely responsible for making decisions about your treatment in consultation with your doctors,
Advanced Decision – An important legal document that has been signed and witnessed, which gives specific instructions as to which medical treatments YOU DO NOT want, and the specific circumstances required for those instructions to apply. All medical staff involved in your care should be aware of it and have copies, as should your loved ones. It can include a statement from you on other broader care matters and generally how you would like to be looked after.
Power of Attorney – There are two types, but in this case we’re referring to a Lasting Power of Attorney for Health and Welfare. This specific legal document gives a person who you trust the power to make decisions on your behalf in case your condition / illness means that you can’t make them for yourself. It can have restrictions, or can work alongside an Advanced Decision on issues around life-saving / life-sustaining treatment, but can also cover decisions about what type of care you’ll receive, where you’ll be cared for, and how your day-to-day life works.