What is advance care planning?
When someone you love and care for is approaching the end of their life, it can be hard to face the future. It can offer much peace of mind to know that their wishes at the end of their life can be met. Our guidance can help you feel more prepared and explore what options are available, from medical considerations to emotional support.
What is an advance care plan?
When someone is approaching the end of life, there are steps you can take to ensure their wishes are put first. This can be done through an advance care plan – a statement that sets out someone’s wishes of their future care.
It’s vital that someone’s advance care plan reflects their wishes. Medical or social care professionals should never apply advance care plans to people based on their medical condition or mental capacity, for example.
What does an advance care plan involve?
If the person you care for is nearing the end of their life and it appears that their condition will deteriorate, they may lose capacity to make decisions about their care. Before this happens, they should be offered advance care planning to record their wishes around the end of life care they want to receive.
This is a voluntary process and the advance care plan (sometimes called a statement of wishes) can be used to record care and treatment wishes. It should be attached to the medical notes and should also be available to those who are involved in looking after the person.
Answering your questions about advance care planning
The advance care plan can include:
- where they want to be cared for when they are dying
- where they want to die
- who they want to be with them
- values such as religious beliefs
- routines that are important to them
- anything that helps them feel safe and comfortable.
As the carer, I took the lead on putting in place the Advance Care Plan (ACP) for Mum with the palliative care nurse. It felt a bit scary and overwhelming at first, but it did help to provide some control and certainty as I was able to ask questions such as, ‘What happens if Mum gets an ailment which is treatable?’" (Zahra)
Through advance planning, the person you are looking after can make an Advance Decision (also known as a ‘living will’ or ‘Advance Directive’ in Scotland). You can also make an Advance Statement.
Making an Advance Decision
This involves completing a form to enable you to refuse any medical treatment you do not wish to receive in the future. It must be in writing and completed by an adult (aged 18+) who has mental capacity (ie, the ability to make their own decisions). It is legally binding.
Making an Advance Statement
This records what your wishes are for future care and is not legally binding but anyone making decisions about your care must take it into account.
This only comes into play when you no longer have capacity to make decisions for yourself. You must have capacity to register this though. It enables someone to personalise and define what the end of their life will look like.
The forms can be provided free and you do not need to use a solicitor. They only apply when you do not have capacity to make decisions for yourself. You can order packs free from the charity, Compassion in Dying.
Yes, the two work very well alongside one another. Having these in place can significantly reduce stress and anxiety for relatives and close friends who are involved in caring for someone at the end of their life.
The charity Compassion in Dying can provide further support and guidance about these options. Hospice UK also offer a helpful online tool to help you consider what options are best for you.
There are some legal differences depending on if the person you are looking after lives in England, Wales, Scotland or Northern Ireland.
Here are some useful links to detailed information about advance planning for all nations as developed by the charity, Compassion in Dying:
If the person you are looking after wishes for others to make decisions about their care and treatment, they can take steps to grant someone this authority instead (or in addition) – often referred to as power of attorney. To find out more, see our section on managing someone’s affairs.
If none of the above measures are in place, decisions about care and treatment for the person you are looking after will be made in their ‘best interests’ by medical and/or social care professionals. Family and carers should be involved in this process.
In England, the government launched the Adult Social Care Action Plan in 2020. This includes measures for supporting people at the end of life as follows:
- Those being cared for and their families should be involved, as much as possible, in planning and decisions about their health and care, including end of life care, and should be supported in having honest, informed and timely conversations.
- It is unacceptable for advance care plans, including Do Not Attempt Resuscitation (DNR) orders, to be applied in a blanket fashion to any group of people.
I spoke to our palliative care nurse about what DNR actually means. Initially, I was very adamant that Mum should always be resuscitated. However, when talking to our palliative care nurse, she explained that the process can be painful to the person receiving it and then there is a very small chance of success, especially when other illnesses are already in the body.”
- End of life care, including palliative care, must continue to be planned in a holistic way involving social care, community nursing, general practice, occupational therapy, and others.
Carer tip: “When putting in place the ACP, it is also good to then start making arrangements for palliative and district nurse involvement and talk to the GP and pharmacist. The earlier this is done, the better because when things start deteriorating, it can be very quick.”
What services are available to help?
Emotional support
This period may be very difficult to cope with emotionally and you may find it helpful to consider receiving some mental health support whilst going through the process. If you feel overwhelmed, you could ask your doctor if they could help refer you to a counsellor or therapy service.
I was very blessed to have wonderful nurses around me who absorbed me and supported me in those very very difficult moments of disbelief and action, urgency and stillness.”
Marie Curie has some helpful information and sources of specialist support on their website.
If end of life planning is in place, it is important to be referred for palliative care support so that a hospice can be considered – see ‘Moving into a hospice’.
Moving into a hospice
If the person you are looking after is nearing the end of their life, it may be recommended that they move into a hospice. They may move into a hospice from their home or from a residential care home or hospital.
They may receive end of life care at a hospice if their illness is no longer curable, but a hospital stay is not necessary.
A hospice can offer a wide range of supportive care that focuses not just on someone’s medical needs but also on their emotional wellbeing. They usually offer holistic support for the person being looked after, and for you as their carer and any (other) family members.
What do end of life care services involve?
End of life palliative care services could include:
- skilled medical and nursing care, including pain and symptom control
- counselling
- complementary therapies
- practical advice
- spiritual/religious support
- creative activities
- physiotherapy
- bereavement support.
Staff at the hospice will aim to provide a welcoming, informal, warm and supportive environment to visitors. There are normally no set visiting times for family members and friends, although this may have changed because of the COVID-19 pandemic – ask the hospice about this.
People are usually referred to a hospice by their GP, hospital doctor or nurse.
Time spent at a hospice and the services they provide are given free of charge.
If the person you are looking after moves to a hospice, their Disability Living Allowance (DLA), Personal Independence Payment (PIP) or Attendance Allowance can continue to be paid in full. This is as long as the Department of Work and Pensions are informed in writing that the person you are looking after is terminally ill. If you receive Carer’s Allowance then this should also continue to be paid if you still meet all of the eligibility conditions.
See our information on ‘disability benefits if you are terminally ill’.
Rather than opting for a hospice, some people choose to spend the end of their lives at home. There is inevitably a lot to take on with this decision.
The situation will likely place a lot more onus on you as the carer. There is a lot to take on board from monitoring the person’s care and liaising with healthcare professionals on a regular basis, as well as seeing to the person’s daily needs from washing to meals. It is important to consider carefully if you have enough time and support to take this on.
Here are some of the practical considerations to bear in mind:
Equipment
This may involve liaising with professionals such as the palliative nurse and Occupational Therapist to ensure you have the right aids and equipment from walking frames to a hospital bed.
District nurse referral
Make sure that the district nurses do their assessment early and get their paperwork organised so that they are ready when you need to call. They may be able to help wth symptom management and/or personal care for example involving a catheter and bowel practicalities.
Palliative nurse visits
These are usually weekly and telephone support is readily available 24/7.
Your local pharmacist
Make sure you have a dialogue with your pharmacist because you may need medicine urgently - the palliative nurse can usually provide the prescriptions.
GP
Make sure the GP is aware of what is going on as you may need video calls with them so that in the event of the person passing, the paperwork can be completed easily and quickly. The palliative nurse can write to your GP to explain the situation.
Respite
Your palliative nurse or district nurse may be able to arrange overnight cover if you are not able to sleep.
Speak to your GP to find out what end of life services are available in your local area, or you can find useful details on the NHS website or the NI direct government website if you live in Northern Ireland.
Arrange a benefits review
It may help to arrange a benefits check to see if you’re entitled to some more support at this time. You can reach our advisers on advice@carersuk.org who are happy to help in this area.
Carer experience: "Mum was on Disability Living Allowance for a while and then I claimed Attendance Allowance for her when her health started deteriorating further."
Will planning
We know that writing a will is important and can provide peace of mind for everyone in the family, but the thought may be overwhelming and you may be unsure where to start.
We can offer some help with this. To request a free legacy guide with tips on how to write one as a starting point, visit our web page.