What to consider when you are planning ahead for end of life
There is a lot to think about, even if doing so is not comfortable. Would you prefer life to be prolonged at all costs or is comfort and quality of life most important to you? Have you made a will? Do those close to you know your wishes or will they have to guess?
There may come a time when you become unwell and can’t tell people around you what you do and don’t want. Planning ahead is a way to record your wishes so that, when that time comes, your preferences are known and can be followed.
Planning ahead gives you control over your future care and treatment and can:
Be a good way to start conversations with people close to you about what you want in the future
Help you make informed decisions in your own time by considering your options
Give you peace of mind that you have taken steps to make sure your wishes are known about, recorded and respected.
The information below will help you set out your end of life treatment and care plan. You will also find some useful information to help you plan and communicate your funeral wishes and manage your digital legacy.
The tools available to help you set out your wishes about end of life treatment and care
There are several documents that help to record (and enforce) your wishes. Please note they apply to England and Wales. Scotland and Northern Ireland have different arrangements. You can create these documents yourself (see the internet resources section below) although for some you may wish to seek professional advice, such as from a solicitor. To find a solicitor near you, visit the Law Society www.solicitors.lawsociety.org.uk/?Pro=True
1. Advance Decisions (or Living Will)
An Advance Decision is a legally binding refusal of treatment made in advance and only comes into effect if you lose the ability to make decisions for yourself (it is not legally binding in Scotland or Northern Ireland).
If a healthcare professional knows you have made an Advance Decision, they have to follow it or face being taken to court if they ignore it. Advance Decisions can be used to refuse any treatment you chose including resuscitation, breathing machines, antibiotics or feeding tubes.
How do I prepare an Advance Decision?
It is wise, but not essential, to discuss your thoughts with your doctor. A lawyer can assist but the decision can still be legally binding so long as it is signed and witnessed. Please note there are temporary Covid-19 arrangements in place to forgo a witness signature and substitute a statement that it is impossible to obtain one. Online and hard copy Advance Decision templates are available from www.compassionindying.org.uk/library/advance-statement/
It is wise to let the following key people know your wishes:
Your family and friends who might be contacted
Your GP surgery asking for it to be added to your medical notes
Anyone else involved in your care e.g. consultant / palliative care team or paid carers.
Let them know your intentions and if you haven't given them a copy, tell your key people where to find your Advance Decisions in a safe place. If you are suddenly admitted to hospital, you should always make sure you have the signed forms with you.
2. Advance Statements (or statement of wishes)
Advance Statements are much wider in scope than Advance Decisions and should be written down. They are a general statement of what you want and what is important to you, e.g. food preferences, religious beliefs, and daily routine. They help people involved in your care to understand what you want and what is important to you if you cannot speak or make decisions.
Are they legally binding?
No, they are not legally binding but should be taken into account by health and care professionals when deciding what is in your best interests.
Again it is wise to share your statement with those you love and to let them know where to find it. Online and hard copy Advance Statement templates are available from www.compassionindying.org.uk/library/advance-statement/
3. Advance Care Plans
These are very comprehensive plans that record your care and treatment wishes, including where you want to receive care, where you want to die, who you want to be with and your religious or spiritual preferences. An Advance Care Plan will also contain information relating to next of kin, emergency contact details, the language you speak, current health issues, and expected emergencies, as well as a list of your medications and any allergies. It is a mini summary of your current healthcare needs and is often done hand in hand with a ReSPECT form (please see item 5 below).
Advance Care Plans are created by GPs or health care professionals who are trained to do so. The advantage of having an Advance Care Plan is that they can help GPs and out of hours doctors or hospital teams guide their decisions based on patient's wishes. These plans are fluid and can be amended as things change or decisions become more obvious.
Treatment Escalation Plans
These are part of your healthcare record and emphasises which treatments would and would not be helpful if you become unwell while in hospital. They are written by your healthcare team and may be updated as your circumstances change, but they should always reflect your wishes. If your condition means that you are not able to express an opinion they should bear in mind any instructions you have already made or conversations with you and / or your family, friends and carers, if you would like them to be involved.
The most common type of end of life care plan is an Advance Care Plan document. If you have made an Advance Decision, Advance Statement or Lasting Power of Attorney (see below) this should be noted in your Advance Care Plan.
When and how are they prepared?
Advance care planning offers people the opportunity to plan their future care and support, including medical treatment, while they have the ability to do so and is especially important when they enter the end of life phase.
Are they legally binding?
No, but it helps people involved in your care to know what is important to you. Doctors will try to follow your wishes and take the plan into account when deciding what is in your best interests.
This plan is normally kept in your GP notes, but it makes sense to ensure you also keep a hard copy with your ReSPECT form (below). There should be arrangements for transferring it to hospital, but if you are admitted to hospital it is a good idea to check that this has actually happened. You can also make sure you take your copy with you when you are admitted to hospital.
Reading through the information above about Advance Care Planning might seem very confusing. You may be left wondering what the differences are between general care planning and decisions made in advance. The NHS has produced a useful overview, which you may find helpful.
4. DNAR (do not attempt resuscitation)
This is a document that used to be issued and signed by a doctor, telling your medical team not to attempt cardiopulmonary resuscitation. It should have been discussed either with you or with a close relative or a representative.
If you have already stated your wishes in one of the ways set out above, these must be taken into account, but bear in mind that healthcare professionals cannot be forced to provide treatment.
If there is no DNAR in place, they will always act in the best interests of the patient, but under some circumstances there may be no benefit of resuscitation, for example if recovery was possible but it could result in having no brain function. Under these circumstances, after careful consideration, it may be decided that resuscitation is not the best option. Health care professionals will always try and discuss this with a relative, where possible. As a result, there is no such thing as an 'always attempt resuscitation' notice.
DNAR has now been superseded by the ReSPECT form (below), which encompasses this information. You can get more information from the NHS via www.nhs.uk/conditions/do-not-attempt-cardiopulmonary-resuscitation-dnacpr-decisions/
5. ReSPECT form
Short for 'Recommended Summary Plan for Emergency Care and Treatment' (emergency end of life treatment). This is
completed in partnership with your GP or with hospital doctors, to record your wishes concerning emergency care and treatment.
This form has recently been widely adopted across the health service; it covers DNAR wishes and whether you would prioritise comfort and quality of life, even if that might shorten your life, or if you wish health care providers to make maximum efforts to prolong your life, even if this could result in your quality of life to be reduced.
Click here for more information about the ReSPECT form. You can print off a PDF version of a ReSPECT form here. If you are admitted to hospital, it makes sense to ensure you always have a copy of your ReSPECT form with you.
There is a informative video available, which will help you to understand why a ReSPECT form is so important and how it can help your healthcare providers ensure you are treated according to your wishes. To view the video, visit www.youtube.com/watch?v=O7wvoT10ZRU
For children and young people
A different form is used: www.cypacp.uk/document-downloads/care-plan/advanced-care-plan-with-respect/
This document is a tool for discussing and communicating the wishes of an infant, child, young person and/or their parent or carer. It is a collaborative document for shared decision making between families and clinicians.
In addition to recording a concise record of the advance plans, this document is designed to provide a rapid overview of key decisions to the attending carers, should an emergency situation arise, when the individual cannot give informed consent for themselves. It incorporates ReSPECT at the end of the document, including decisions around resuscitation, and identifies who has been involved in its development, including Mental Capacity Act and parental responsibility (deputyship over 18).
6. DS1500 - accessing different benefits
A DS1500 is used for patients who are at the end of their life and are expected to only have six months or less to live. It is a factual report that describes your illness, symptoms and treatments.
The form is helpful when someone needs to apply for benefits on someone else's behalf. They will require a completed DS1500 form (e.g. for Attendance Allowance, Personal Independence Payment, Employment and Support Allowance, Universal Credit and Disability Living Allowance). The DS1500 can be completed with the help of a GP, a Macmillan or LOROS nurse.
It is important to note that Improvements have been now made to benefit eligibility at the end of life. The Special Rules provide people nearing the end of life with faster and easier access to some benefits.
On Monday 4 April 2022, the eligibility criteria for the Special Rules changed for two benefits: Universal Credit (UC) and Employment and Support Allowance (ESA). This change means that individuals can make a claim under the Special Rules to these benefits if they are likely to have 12 months or less to live.
At present, the previous rules, which allow fast-tracked access to benefits if an individual is likely to have less than 6 months to live, still apply for claims to Personal Independence Payment (PIP), Disability Living Allowance (DLA) and Attendance Allowance (AA).
Clinicians, such as a GP, hospital consultant, hospice doctor or specialist nurse, can be asked to provide medical evidence (a DS1500 or the new SR1 form) to support benefit claims under the Special Rules process.
To find out more about the changes and the new medical evidence form, DWP have published this guidance.Further updates will be made available once the new 12-month end of life approach is in place for all benefits.
7. Donating organs and tissue
You have the right to decide what may happen to your body after death. If you wish to donate, you have the choice of what to donate. Donation of whole organs (e.g. kidneys, lungs, heart) and donation of tissues (e.g. bone, corneas, skin) involve different requirements. However, the circumstances may make it impossible to use your organs or tissue; for example, most organ donations have to be completed very soon after death and will not proceed if any serious infection or cancer is involved. Restrictions around tissue donation can be more flexible.
Please be aware that although your wishes are paramount in law, in practice most organ donations will also require the consent of your next of kin. So make sure you have discussed your wishes with your family.
How to donate tissue or organs
Please be aware that systems have changed for organ donation, so it is important to see how this will affect you. If you wish to donate your whole body to science or to train medical professionals there are different rules; you need to contact the Medical School of your choice. The Human Tissue Authority provides more information and holds a list of Medical Schools - www.hta.gov.uk/donating-your-body.
You can also listen to a podcast detailing the experience of hope and transition after an unexpected death with Vicki Caldwell, mother of organ donor Fi via www.speakformelpa.co.uk/podcast-episode-20
Formal legal documents
For more detailed information about the legal documents listed below, please click here.
1. Lasting Powers of Attorney
A Lasting Power of Attorney (LPA) gives legal power from you, 'the donor', to another person(s), called 'the attorney(s)', to make decisions on your behalf. So your attorney must be someone you trust to act as you would want them to and make decisions on your behalf. There are two types of LPA and both schemes are administered through the Office of the Public Guardian:
Health and Welfare LPA: This allows you to chose a person(s) to make decisions e.g. daily routine, where you are cared for, treatments that keep you alive. These powers will only be used when you are incapable of making your own decisions.
Property and Financial Affairs LPA: This allows you to choose one person(s) to make decisions e.g. collecting benefits, paying bills or selling property. If you give them permission, they can start using this power straight away.
It is useful to make sure your GP or health care provider knows that you have a Lasting Power of Attorney in place so that they know who to contact in an emergency.
2. Making your will
While wills can be made without a lawyer in extreme circumstances you are strongly advised to seek the services of a solicitor. For more information, please see Legal and Financial section on the site.
In addition to the resources detailed below, you will more useful information in the last days section on this website, which details what care arrangements can be made to make someone as comfortable as possible during the last days. It also explains what physical and emotional changes you might expect.
Below you will find some useful internet resources:
Helping you prepare for the end of life, including how to talk about it, plan for it, and record your wishes. Detailed instructions and relevant forms are available for advance decisions, advance care plans, lasting power of attorney etc.
0800 999 2434
For people living with any terminal illness, and their families, Marie Curie offers expert care, guidance and support, free of charge, to help them get the most they can from life, in the time that they have left
Marie Curie, Corby: 01536 400943
A coalition across England and Wales, which aims to help people talk more openly about dying and death and bereavement, and to make plans for the end of life.
Advance Care Planning, NHS
What about your digital legacy?
Times have changed with many of us having most of our information digitally. Our digital legacy is all our information that we have left online. This may include photos, blogs and listings about the person, their social media profiles, gaming profiles and bank accounts.
It is important to think about what you would like to happen to yours. You will need to make sure you have left information such as your passwords and whether you would like to keep your social media accounts active. There is lots of useful information available via these links, to help you think about what is right for you:
Your funeral wishes
You may or may not have thought about what you would want for your funeral. It can be difficult to know where to start as there are many decisions to make such as; do you want to be buried or cremated, would you like it to be a celebration of your life, what music would you like. These are all important questions.
My funeral wishes helps you to think about what works best for you and for your loved ones - www.dyingmatters.org/sites/default/files/My_Funeral_Wishes_2014.pdf