Your advance care plan covers medical care including Advance Decision to Refuse Treatment (ADRT), lasting power of attorney, your will and estate planning, and your statement of wishes.
On this page:
- What is an advance plan?
- Advance Decision to Refuse Treatment (ADRT)
- Do Not Resuscitate (DNR)
- Advance statement of wishes
- Estate planning
- Lasting power of attorney
- What do you want to happen after you die
- Video: Should everyone have an ‘end-of-life’ plan? BBC Ideas
What is an advance plan?
An advance plan refers to a set of documents (some legally binding) that allow you to make decisions about your medical treatment and other matters. The plan ensures that your wishes are respected and followed, even if you’re unable to communicate your wishes yourself i.e. if you become incapacitated.
- what you want and what quality of life means for you
- what you don’t want
- how and where you want to be cared for
- who speaks for you if you’re incapacitated
- what you want after death.
It helps those around you to understand your wishes to be able to advocate for you, if you’re unable to make decisions yourself at any time. You give a copy to your family, friends and carers, and health and social care professionals. You may be thinking about your advance plan as you have received a terminal diagnosis. But you can plan ahead whilst you are fit and well, to make important decisions about your care.
The benefits of having an advance plan include it:
- allows you time to contemplate what’s important to you to be able to plan for it
- provides emotional support, as opening these kinds of conversations can strengthen relationships through transparency
- ensures your wishes are followed when you can’t communicate them
- improves the quality of your end-of-life and allows you to live as long and comfortably as you can
- eases the burden on your family and friends if they know your wishes and research has shown it can reduce stress, anxiety, and depression in surviving relatives
- provides financial and legal clarity, simplifying the processes after your death for your loved ones
- provides relief and clarity for the medical profession, that they don’t have to make decisions in what can be an emotional time.
While there’s no standard advance care plan, in England the Universal Principles for Advance Care Planning set out six high level principles for advance care planning in England.
The Resuscitation Council UK created a ReSPECT form, which stands for Recommended Summary Plan for Emergency Care and Treatment. Follow Joe and his family as they develop and use a ReSPECT plan to make sure his wishes and needs are heard: Joe’s ReSPECT journey – a ReSPECT explainer for people and their families.
Video: An Act of Love | Greg Wise
Greg is one of the patrons of End of Life Doula UK, where I’m a member and on the committee supporting member wellbeing.
Advance Decision to Refuse Treatment (ADRT)
An advance decision to refuse treatment is a document that outlines your preferences for refusing medical treatments in specific circumstances, if you can’t communicate your wishes. They have been known as ‘living wills’.
Treatments you might want to refuse include:
- feeding tube
- IV hydration
- pain control
- cardiac devices
- radiotherapy or chemotherapy
Your advance decision to refuse treatment is a legally binding document. It must include the language I refuse ‘even if my life is at risk’.
Claire Fuller has a podcast on Advance care planning and an episode on Advance Decisions to Refuse Treatment with Celia Kitzinger.
Do Not Resuscitate (DNR)
You can choose to refuse CPR (cardiopulmonary resuscitation) by filling in a DNACPR form with your medical team. If you don’t have one, the medical team will make a decision in the moment. The DNR only relates to the heart, so it will not affect all other forms of resuscitation.
Read about Do not attempt cardiopulmonary resuscitation (DNACPR) decisions on the NHS website. Watch a video on CPR from Talk CPR.
Compassion in Dying also has information about Do not resuscitate (DNR) forms and CPR decisions, including how DNR decisions are made, how to question a DNR decision and how to make sure a DNR form is valid.
You can use a Lions Message in a Bottle to keep basic personal and medical details in a common location – the fridge. Paramedics and other emergency services know to look in the fridge to see if you have a bottle, and it helps them to save time in identifying your needs, which could also be allergies or medication.
Financial and estate planning can be complex and sometimes it’s not. Creating a will or trust will ensure your assets and estate are distributed as you wish after your death.
I have a law degree, so am able to support the understanding of legal documents. And have a will template that I can share for simple estate planning.
If you have a complex estate or need a trust, then you’ll need to speak to a solicitor. I can provide a list in the West Herts area.
Lasting power of attorney
They designate a trusted person(s) to make decisions on behalf of a person if they’re unable to do so themselves.
There are two types:
- Health and welfare – decisions about your daily routine, like washing, dressing and eating, moving onto a care home or life sustaining treatment
- Property and finance – managing back accounts and bills, collecting your pension or moving home.
The Office of the Public Guardian (OPG) charges £82 to register each, so £164 for both. If your gross annual income is less than £12,000, it’s £41, and there are exemptions available to those on certain means-tested benefits. Be aware that it can take weeks for the OPG to register them.
Key decisions when choosing your attorney(s):
- how many you want (you can choose more than one)
- what instructions you want to include for them to follow
- if you have more than one, how they will make decisions, either:
- separately or together (‘jointly and severally’) – where attorneys can make decisions on their own or with other attorneys
- together ( ‘jointly’) – where all the attorneys have to agree on the decision.
I can support you with filling in and submitting the documents and payments.
What do you want to happen after you die
As well as planning for your estate and your funeral, you can plan for your:
- digital legacy – passwords, social media, gaming profiles and website or blog (see Digital Legacy Association)
- emotional legacy – like letters to people and memory boxes
- organ donation – whether you want it or not (depending on where you die)
- post mortem and autopsy – whether you want it or not (depending on how you die)
- online memorials, like MuchLoved or Memories.
Video: Should everyone have an ‘end-of-life’ plan? | BBC Ideas
I charge £150 for an advance plan, which includes a couple of meetings (online or in person) and writing up your plan, to share with family and friends and for submission to your doctors.
If you need support with legalities and finances, wills or appointing a lasting power of attorney, I charge at rate of £25 an hour for any additional work.