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Advance Care Planning
Advance Care Planning: making your wishes known
Nobody likes to think about becoming seriously ill or approaching the end of life. But planning ahead isn’t about expecting the worst – it’s about making sure your wishes are known and respected if a time comes when you can’t speak for yourself.
Advance care planning gives you the opportunity to think about what matters most to you, discuss it with those close to you and record your preferences for future care.
For many people, it provides peace of mind and helps reduce uncertainty for family members who might otherwise have to make difficult decisions during a crisis.
What is advance care planning?
Advance care planning is a series of conversations about your future care and treatment.
You remain in control throughout the process. There is no obligation to make decisions immediately, and your wishes can be reviewed whenever your circumstances change.
Planning ahead is particularly valuable if you have:
• a long-term health condition
• a progressive neurological condition
• dementia or memory problems (while you still have mental capacity)
• cancer or another life-limiting illness
• increasing frailty in older age.
However, anyone can choose to have an advance care plan.
The aim is simple: to help ensure that healthcare professionals understand what matters to you if you become unable to communicate your wishes in the future.
What can you include?
Everyone’s priorities are different.
Your advance care planning conversations might cover:
• where you would prefer to receive care
• whether you would rather be cared for at home, in a hospice or in hospital
• the treatments you would or would not want
• what makes life meaningful for you
• your cultural, religious or spiritual beliefs
• people you would like involved in decisions about your care
• practical matters that are important to you and your family.
Some people also use the opportunity to discuss funeral wishes or other personal arrangements, although these are separate from medical decisions.
Why does planning ahead matter?
Research consistently shows that people often receive better, more personalised care when their wishes are discussed early.
It can also reduce anxiety for family members, who may otherwise be left trying to guess what their loved one would have wanted.
A recent report from the Parliamentary and Health Service Ombudsman found that many complaints about end of life care involved missed opportunities to discuss patients’ wishes before they became too unwell to take part in decisions.
When should you start?
There is no “right” time.
Many people begin planning after receiving a diagnosis of a serious illness, while others decide to do so simply because they are getting older.
The important point is that advance care planning works best when it happens before a crisis develops.
Your GP, specialist nurse, consultant or community healthcare team can all help start the conversation.
What is a ReSPECT form?
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment.
It is a document completed jointly by you and your healthcare professional after discussing your wishes and medical circumstances.
Rather than focusing on one treatment, the ReSPECT process records your overall preferences for emergency care.
For example, it may include:
• treatments that are likely to help you
• treatments you would prefer to avoid
• important information about your health
• your personal priorities and values.
The form is designed to help ambulance crews, emergency departments and hospital staff understand your wishes quickly if you cannot communicate them yourself.
Not every part of the UK uses ReSPECT in exactly the same way, so ask your healthcare team what arrangements apply in your area.
Understanding DNACPR decisions
One of the biggest misunderstandings concerns Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions.
Many people wrongly believe a DNACPR means “do not treat”.
It doesn’t.
A DNACPR decision relates only to whether healthcare professionals should attempt cardiopulmonary resuscitation (CPR) if your heart stops beating or you stop breathing.
You should still receive:
• pain relief
• oxygen if appropriate
• antibiotics if appropriate
• nursing care
• food and drink where suitable
• comfort care
• any other treatment that is considered appropriate.
Whenever possible, healthcare professionals should discuss a DNACPR decision with you before it is made. If you cannot take part in the discussion, they should normally involve those close to you.
Lasting Power of Attorney and who makes decisions
Many people assume that husbands, wives or adult children automatically have the legal authority to make healthcare decisions on someone else’s behalf.
This is not always the case.
In England and Wales, people can appoint someone they trust through a Lasting Power of Attorney (LPA) for Health and Welfare.
This allows that person to make certain healthcare and care decisions if they lose mental capacity.
Different legal arrangements apply in Scotland and Northern Ireland, although similar safeguards exist.
We have information here about Lasting Power of Attorney in England and Wales
Enduring Power of Attorney (Northern Ireland)
What is an Advance Decision?
Some people also choose to make an Advance Decision (sometimes called a living will).
This is different from an advance care plan.
In England and Wales, an Advance Decision allows someone with mental capacity to refuse specified medical treatments in certain future circumstances.
If it meets the legal requirements, healthcare professionals are generally required to follow it.
The legal position differs in Scotland, where advance directives are recognised through common law rather than specific legislation.
Because these documents can have important legal consequences, it is sensible to discuss them with your healthcare team before making one.
We have information about making an Advance Decision or living will here
Questions you may want to ask
If you’re thinking about advance care planning, you could ask your GP or healthcare team:
• Is advance care planning appropriate for me?
• Can we discuss my future care at my next appointment?
• Is the ReSPECT process used in my local area?
• How will my wishes be shared with other healthcare professionals?
• How often should my care plan be reviewed?
• Should I consider appointing someone to make decisions if I lose capacity?
Remember: your wishes can change
Advance care planning is not a one-off event.
Your health, priorities and circumstances may change over time, and so can your preferences.
It is a good idea to review your plans periodically and let your healthcare team and family know if anything changes.
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