Deciding right Information for Patients and Public
Information for the public about Deciding Right
Planning For Your Future Care Leaflet
A leaflet for patients on advance care planning.
Deciding right public facing Powerpoint
Deciding right is an integrated approach to making care decisions in advance with children, young people and adults. This is a short presentation which is aimed at raising public awareness of an initiative to support you to make plans about your future care.
Alternatively this video is available from St Benedicts Hospice and Centre for Specialist Palliative Care website.
Frequently asked questions by patients, their families and carers
What is Deciding right?
You have the right to make decisions about your care and medical treatment throughout your life. But Deciding right is specifically designed to help you plan ahead and make choices now for a possible situation in the future when you no longer have the ability (and capacity) to make those choices.
While you can still easily communicate, you can tell everyone involved in your care, both professionals and your family members what you would like to happen if you lose capacity and, by doing it together you can make informed decisions, get good advice and, importantly, make sure everyone knows your wishes.
For anyone without the capacity to make decisions for themselves, Deciding right makes sure that all decisions about care and treatment are made in their best interests. This is not simply a conversation, but a detailed review of the individual’s wishes and preferences, beliefs and values. This takes place with the partner, relative, and professional health care staff.
Deciding right is most relevant for adults, children and young people with a long term condition or terminal illness but anyone can think about planning their future care but applies to all individuals. It is flexible and is personal to you including your wishes and feelings; beliefs and values.
For the people working with you or caring for your health, Deciding right places the Mental Capacity Act (MCA) at the centre of shared decision making by helping professionals properly determine your level of capacity to make decisions, then helping you and your family make the right decision about your care and treatment.
What is the Mental Capacity Act (MCA)?
The Mental Capacity Act 2005 applies to anyone who needs to make a care decision but who can’t make some or all decisions for themselves. The ability to understand and make a decision when it needs to be made is called ‘mental capacity’.
The MCA requires professionals to assume an individual has the capacity to make their own decisions. In this situation an individual’s decisions take priority.
However, if anyone suspects an impairment or disturbance of their mind or brain the MCA requires that an individual’s capacity to make a decision is checked. This is a simple test which asks four questions:
- Can they understand the information?
- Can they remember the information long enough to weigh it up?
- Can they weigh up the pros and cons of the care option?
- Can they communicate their decision?
If they can manage all of these they have the capacity for that particular care decision.
If they cannot manage one of these then they may not have capacity. In this case any decision must be made in their best interests. This is not simply the opinions of others. It is a checklist under the Mental Capacity Act that requires all those who can speak for the individual to estimate what decision the individual would have made if they still had capacity.
People working with or caring for adults who lack capacity to make decisions for themselves have a legal duty to consider the MCA Code of Practice.
How can I make care decisions in advance?
While you have the capacity, there are several ways you can do this. These rules are about ensuring you get the treatments you need, not that it is restricted.
The four main ways of ensuring your wishes are considered are:
1. An advance statement:
This is where you write down your wishes and preferences, beliefs and values. You can do this yourself or together with your healthcare team; your carers and / or family. If you can’t write yourself, someone can help you do this.
In most areas across the North East and North Cumbria health and social care staff have specific forms to do this, just ask. If they don’t, you can still write down your advance statement, but it is important you make sure everyone involved in your care knows what they are and where they are kept.
An advance statement can include things as diverse as your chosen place of care, like a home or a hospice; whether you would like to have some religious interaction or even whether you like peace and quiet or some music or a radio as background company.
An advance statement only becomes active if you lose capacity for those care decisions – if this happens there is a legal requirement on health and social care professionals to take it into account when making decisions in your best interests.
However, an advance statement is not legally binding on carers, but carers are legally bound to take it into account – it cannot be ignored.
2. Advance decision to refuse treatment (ADRT):
This allows you to refuse specific treatments if, in the future you lose capacity to communicate them. These decisions are not always about life sustaining measures and are not general statements to be considered in every incidence. For example you may not want life support such as ventilation or tube feeding if you are unlikely to recover. However, if it may be a temporary measure necessary for a short period of time to help you over an illness, then you would want this treatment. Your statement needs to be detailed and specific.
An ADRT can be a simple verbal agreement between you and your health or social care team. However, if you are refusing life-prolonging treatment it must be written down. Deciding right has special ADRT form, you can see an example form on the Deciding right regional forms page.
If completed properly and applicable to the situation, ADRT is legally binding.
If you want to refuse life sustaining treatment, such as CPR, there is a separate form, the DNACPR (do not administer cardiopulmonary resuscitation). A DNACPR is not legally binding but exists to ensure your wishes are identified in an emergency.
3. Lasting Power of Attorney (LPA)
As well as the options above, you can also appoint someone on your behalf to make important decisions for you if you lose capacity. This is a Lasting Power of Attorney.
As this is a legal process, is normally done through a solicitor but you can organise it through the Office of the Public Guardian (OPG).
There are two types:
- Property and affairs lasting power of attorney: this authorises someone to decide about your money and property if you lose capacity for those decisions.
- Personal welfare (health and welfare) lasting power of attorney: this authorises someone to decide about health and care decisions if you lose capacity for those decisions.
An LPA must be appointed before you lose capacity.
For people who have already lost capacity, carers or family members can apply to the OPG for similar authority acting as their deputy.
4. Emergency Health Care Plan (EHCP)
These are particularly relevant if you have a complex medical condition and could experience a health emergency, for example seizures, hypoglycaemia or an asthma attack. They can be completed by an individual with capacity, or using the best interests process for someone who lacks capacity.
An EHCP gives directions for carers, for example who to call or what first aid can be used, and more detailed advice for professionals and emergency teams, for example what drugs to use or what treatment would be appropriate in these situations.
It is not a legal document but can be invaluable to all your carers to advise them what to do in an emergency.
An EHCP can be written on behalf of a person who lacks capacity, but only if the decisions are made using the best interests as outlined in the Mental Capacity Act.
It is not a legal document but can be invaluable to all your carers to advise them what to do in an emergency.
Easy Read EHCP Patient/ Carer information
This EASY READ guide was co-produced by Inclusion North’s Stop People Dying Too Young Group, the North East and North Cumbria Learning Disability Network, the NHS North East and North Cumbria Clinical Networks and the Integrated Care System. Together they have developed information that is easy to understand about Emergency Health Care Plans. There are 3 stories about people who each have an Emergency Health Care Plan. The stories have been created using Widget Communication in Print symbols.
Coproduction work between NENC Palliative and End of Life Care Group, NENC Learning Disability Network, Inclusion North and the Stop Dying Too Young Group – the group of experts by experience provided consultation and ideas over a 6 month project which led to the production of easy read, accessible information for Emergency Health Care Plans. This film supports the written information and provides information for patients and carers. The link to the film can be found here.
Where are the forms kept? Will they get lost?
Any documents are best kept wherever you are being cared for, for example in your home or care home. There is a scheme in the North East and North Cumbria of putting such documents in a bright yellow envelope to ensure they are visible. Again, your health or social care team should be able to advise you of this and provide an envelope.
Such documents are often kept in the fridge or pinned to your door, making it easier for everyone to find.
I have a living will and an advance directive. Aren’t these the same?
No. Using them risks confusion over their meaning and legal status.
Both came before the Mental Capacity Act and therefore have no legal meaning or definition. If you want to make a general statement about your future care, make an advance statement. If you want to make a legally binding refusal of future treatment, make an advance decision to refuse treatment (ADRT).
My healthcare team haven’t mentioned this to me before: what is the best way for me to speak to them about it?
You can print off the deciding right leaflet to take to your doctor, nurse, healthcare professional or social worker to start the conversation about your wishes. Or you can just tell them you have heard about your right to make decisions and would like to discuss it.
I don’t have a computer so I can’t look at a website for information; will my doctor, nurse or social worker take time to talk to me?
Yes – they should be doing this anyway. In addition, increasing numbers of professionals understand the need for advance care planning and the options open to you.
Will Deciding right affect my care?
No matter what happens, you will always retain the right to dignity, respect and physical and emotional care.
Deciding right simply clarifies what care decisions you have for the future and will only be considered if you lose capacity.
Do I have to plan ahead?
No, you don’t have to make a plan. Deciding right is entirely voluntary and you do not have to make decisions about your future care if you find this too difficult or distressing. If you are uncertain or have any questions, speak to your health or social care professional.
What happens if I lose the capacity to decide before I have made plans? Will a decision be made for me?
Your rights are protected under the Mental Capacity Act (MCA). Anyone who cares for you are legally required to decide what decision you would have made if you still had capacity.
No one person has the right to make a decision on your behalf (including family and doctors). Instead, everyone must follow a series of checks required by the MCA (the best interests checklist) and any statements, decisions or orders you made when you had capacity will be an important part of this process.
The decisions from the best interests process can decide care and treatment and can be used to inform an Emergency Health Care Plan.
What if I change my mind?
Any decisions you make about your future care will only be considered when you no longer have the capacity to do so yourself.
While you are still able, you simply continue to discuss your care and treatment with those supporting you.
Do I have to tell my family?
No. Any decisions you make are confidential to you and your health or social care professionals. If you chose not to tell your partner or relatives, it is important that all your health professionals know this.
Will hospitals take notice of my decision? Will my carers act in my best interest?
Yes, they are now legally required to do so under the Mental Capacity Act. If you have capacity, professionals must ask for your consent for treatment.
If you do not have capacity for decisions, then everyone who knows you must follow the best interests process of the Mental Capacity Act. To do this they run through a series of checks. If you have made plans in advance then these will form an important part of that process.
What happens if I just have an accident and need treatment? Does my decision still stand?
When you make care decisions in advance it is important to make clear the circumstances in which you intend your decisions to be followed. This might be where you use an Emergency HealthCare Plan.
If something unexpected happens to you that makes you lose capacity, then everyone who knows you must follow the best interests process of the Mental Capacity Act. To do this they run through a series of checks. If you have made plans in advance then these will form an important part of that process.
Does Deciding right have any authority?
Yes. It is a regional initiative in the North East and North Cumbria, but its authority comes from the Mental Capacity Act (2005) and national guidelines for health and social care professionals.
NHS England has also adopted it as good practice so the process could be shared across the country.
Do I need a solicitor?
No. You can simply discuss your wishes with your health or social care team and let them know what you would like. Then together you can plan the best options and how properly record it depending on your needs.
You can consult a solicitor to set up a Lasting Power of Attorney or deputyship application who will help you apply to the Office of the Public Guardian. However, you can go direct to the Office of the Public Guardian website for advice.
Or write to:
Office of the Public Guardian
PO Box 16185
How do I get more information about what to do?
There is a lot more information on this website however this is mainly useful to professionals.
The best way for you to find out if this is for you is to discuss it with your care professional such as your GP, consultant, nurse, social worker or carer.
You may also find the following leaflets useful: