Legal steps to consider when diagnosed with a life-limiting illness

On top of the heartbreak and worry that a diagnosis of a life-limiting illness can bring, there is likely to be a raft of concerns and uncertainties about your care and financial affairs, and it can be difficult to know exactly how to prepare from a legal standpoint.

There are steps you can take to ensure that your care runs smoothly following a diagnosis. A health and welfare lasting power of attorney (LPA) can be an essential part of future care planning for those with a life-limiting illness, alongside an advanced care plan.

Considerations for a health and welfare lasting power of attorney

You may make a lasting power of attorney (LPA) for your health and welfare decisions either alongside a property and financial affairs LPA or independently.

If making both types of lasting power of attorney you do not have to appoint the same attorneys for each. What is important is that you are certain your chosen attorneys have the suitable experience and that you trust them to support you and make difficult decisions on your behalf. You should also bear in mind your relationship to them, as well as the nature of your condition when considering their suitability.

Once you have chosen a suitable attorney, or attorneys, it is important to remember that they will have the power to make decisions about your care and personal welfare only when you no longer have capacity to make decisions yourself.

Whilst any decisions they make should, ultimately, be in your best interests, they should also consider any specific wishes you have made. It is, therefore, imperative that, whilst you have capacity and are able to, you communicate openly with your attorneys about the types of decisions you would like them to consider in various circumstances that could arise.

Many people prefer to ensure that their views are recorded by including instructions and preferences within their LPA. Having your choices written down makes it easier for your attorneys to recall your views and to refer to them as circumstances change over time. You do not have to include instructions in your LPA, however if you choose to you need to be careful when expressing those instructions and preferences to ensure they are legally valid.

A health and welfare LPA also allows you to decide who should make any decision about life sustaining treatment if one needs to be made. You may either choose for your attorneys to make this decision or for the medical professional to do so. Either way, your care providers should always discuss the options with your attorneys before a decision is reached. If you leave this decision up to your attorneys, it is vital that you ensure it is a decision they will be comfortable making.

Other advanced care planning

A health and welfare LPA will likely be the most valuable part of your legal planning following a diagnosis.

In addition to your lasting power of attorney, an advanced care plan allows you to set out in greater detail your personal wishes and preferences regarding the care and treatment you should receive. Typically, this is prepared with the help of your care providers and is essentially a written document which sets out your choices and provides a guide to your care providers and those supporting you. Those choices can include anything from a specific care home in which you wish to live to dietary requirements or personal care, such as haircuts and manicures. Your advanced care plan should be provided to your attorneys and to anyone involved in your care to ensure that everyone understands your wishes and is working together with the same aims in mind.

When preparing an advanced care plan, you should consider the current and future anticipated effects of your illness, the type of care needed bearing in mind accessibility and affordability, the benefits and risks of different treatments, and the type of care or treatment you are happy to receive. Your advanced care plan should be continually reviewed by you and clearly communicated to your attorneys, family, friends, care providers, and anyone else who plays an important role in your life.

Whilst it is a good idea to set out your wishes in this way, you should avoid being too rigid and you should try to consider as many eventualities as possible and how you would like to be treated in each case.

As part of your advance care planning you may wish to consider if there are particular treatments that you would not want to have; this is an advance decision to refuse treatment, sometimes known as a living will. It lets you make a decision now to refuse a specific type of treatment in the future and can only be relied upon if you do not have the capacity to decide at the time the treatment decision is needed.

If considering an advance decision to refuse treatment it is a good idea to take legal advice, particularly if you have or are considering a health and welfare LPA so that your wishes are clear and your documents do not contradict one another.

Will considerations

Putting plans in place for the remainder of your lifetime will, naturally, be your key priority, but the diagnosis of a life-limiting illness may also prompt you to consider your will and any wishes related to your death.

If you have not already made a will, you should think about who you would like to benefit from your estate. If you already have a will, it is important to revisit this to ensure that it remains in line with your wishes. If you are in any doubt about whether your current will is still suitable, you should seek legal advice to either ensure that you are entirely satisfied with the terms or to make a new will to reflect your current wishes.

How can we help?

If you are struggling to know how to prepare yourself legally following the diagnosis of a life-limiting illness, our lawyers can advise you on all aspects of your legal planning.

For further information, please contact Sarah Cladingboel in the Vulnerable Client team on 01634 828277 or email