Support for anyone with a terminal illness – Marie Curie

Marie Curie nurses and healthcare professionals offer expert care and support for anyone with a terminal illness, and those close to them. The UK’s leading end-of-life charity provides expert care and support in homes, hospices and over the phone. They are looking at new ways to reach more people earlier and in different places of care. They also continue to campaign for a better end of life for all, and are the biggest charity funder of palliative care research in the UK. 

Phil Pooley, Legacy Lead at Marie Curie highlights why thinking about your end of life care and wishes now may benefit you financially, but why doing so is also more likely to ensure you will receive the care and support you may need. It could be the greatest gift you can leave for your loved ones. 

Recent UK research shows that almost 1 in 3 people die without the essential care and support they need. That’s around 200,000 people every year1. 

Fear, awkwardness, or stigma often stops people talking about end-of-life plans, and it can leave them feeling deeply unprepared and distressed. There is no getting away from the fact that death is such a pivotal and profound moment of our lives, so how can we, and why shouldn’t we consider this topic more openly?

Talking about dying and death is not easy 

According to Marie Curie research conducted in 2023, of those surveyed:

• 86% had not discussed end of life wishes with anyone, even those closest to them.
• 93% had not made initial end of life enquiries with a healthcare provider.
• 80% are unaware of the death administrative and practical tasks that need to be completed.

Planning ahead allows us to: 

• Discuss and identify what matters to us.
• Make personal and informed choices about the type of care we wish to receive.
• Be better prepared to cope with the emotional and practical experiences around death.
• Have the opportunity to get our finances and personal affairs in order.
• Enjoy greater peace of mind knowing that our wishes are understood and plans are in place.

If we are having open conversations about this subject, we are permitting our preferences and creating ease for the end of our lives. For example, when someone’s dying or grieving, they shouldn’t have to spend their precious time and energy wading through piles of administrative tasks related to death, dying and/or bereavement (‘Sadmin’), which can feel upsetting to manage. Marie Curie’s ‘Make sadmin simple’ campaign aims to help those struggling with these tasks at a vulnerable time, but planning ahead could help enormously.

A gift for our loved ones 

It is not just about us – it is about our loved ones too. By planning ahead and thinking about our care and wishes ahead of time, we can: 

• Empower and lower the burden on our loved ones to make decisions on our behalf, when we are not well enough to do so.
• Provide comfort by knowing they are honouring our wishes.
• Make it as easy as possible for them to deal with practical and administrative aspects of our death.
• Minimise their levels of anxiety, stress, guilt, and regret at the most difficult of times.
• Enable them to celebrate our life and legacy and continue to cherish our memory too.

Planning for life 

There may be things you want to see, do, or express before you die. Some people want to revisit friends, past experiences, significant places, or even look at old photographs. Creating this unity and identity around your life and talking about death is about planning for life, helping us make the most of the time that we have.

Benefits to charitable giving 

Charitable giving has been proven to improve the overall well-being of the giver themselves, by means of developing empathy, widening your perspective on the world, and offering a meaningful purpose to life.

There are other advantages in supporting charities, for example, gifts in wills are completely free from inheritance tax and can offer a potential significant reduction of the inheritance tax rate on your estate, depending on how much you leave to a charity.

Philanthropic gifts can also reduce the taxable value of your estate. This means your legacy can have a deeper, more lasting impact supporting the causes you believe in, while also providing financial benefit for those you leave behind.

Thinking about your future care 

Most people don’t think about their future care until they need it. But it is never too early to start thinking about what your preferences might be. 

This process is sometimes referred to as advance care planning and includes any decisions you make about your future care. This might be: 

• How you would like to be looked after.
• Where you would like to be looked after.
• Any treatments you don’t want to have - sometimes called an advance decision to refuse treatment (ADRT).
• Any spiritual or religious beliefs you would like to be considered.
• Who your doctors or nurses should talk to if you do not have capacity to make decisions.
• The details of the person you have appointed to make decisions on your behalf if you are unable to make them (your Lasting Power of Attorney).
• How you would like practical matters to be dealt with, such as the care of a pet.
• What you would like to happen to your body after you die.

More details about this planning can be found on the Marie Curie website. 

Whatever stage you are at in your life, planning ahead can ensure that other people know what you want and make it more likely that your wishes will be followed in the future. But perhaps most important of all, it will make it as easy as possible for your family or friends. At an emotional and difficult time, it could be one of the greatest gifts you leave them.

Most people don’t think about their future care until they need it. But it is never too early to  start thinking about what your  preferences might be.