Guide to end of life planning

Planning ahead can be very helpful to those who have received a life limiting diagnosis. It also applies to anyone of any age who would like to put their affairs in order, those who have views of what they may want or not want at end of life and those who would like to unburden those close to them of difficult decisions and difficult tasks. If a time comes when, for whatever reason, a person is unable to make a decision for themselves, or communicate, then professionals and close ones can be guided by the plans they have made in advance. Most people feel that making plans helps reduce their worry and anxiety about the future and gives them a sense of empowerment and control at a time when often people feel it has been taken away from them.

If you are considering end of life care planning because of a life limiting diagnosis which you have been given or which has been given to someone close to you, it can be a very difficult situation which brings up many strong emotions. Looking after yourself and your well-being is very important. Please read the information on emotional support and grief and seek out support if you need it (Book 2 When someone dies page 25 available on Bristol Memorial Woodland Trust resource page or by call on 01454 414 999 to get your hard copy).

Planning ahead can involve sorting out your plans for your future health, your end of life care as well as legal matters and funeral arrangements. It is often called Advance Care Planning by professionals.

Benefits of Advance Care Planning:

• People feel more in control of their future.
• People experience reduced worry and anxiety about the future.
• Ensures people get their needs and choices met at the end of their life – wherever possible they are cared for and die in the place of their choice.
• Less crisis and fewer unwanted interventions with proactive care.
• Reduced burden on family or close ones.
• Reduced fear of dying.
• Reduced conflict between family members.
• Minimised guilt and regret among the bereaved. Helping the grieving process.

Further Information

The BBC ideas documentary collection, have made a short (5 min) film about the challenges and benefits of end of life planning:

www.bbc.co.uk/ideas/videos/should-everyone-have-an-end-of-life-plan/p099x2yh

Advance Decision to Refuse Treatment

Legally we can’t demand certain treatments, but we can choose to refuse treatments. An advance decision to refuse treatment (sometimes known as Advance Decision, ADRT, or living will) is a decision you can make now, to refuse a specific type of treatment at some time in the future (when you are not able to participate in the decision making).

People can say for example that they don’t want to be resuscitated or don’t want artificial nutrition, or don’t want chemotherapy. It is really useful to discuss your advance decision to refuse treatment with your doctor or the senior health professional involved in your care.

An advance decision to refuse treatment is a legally binding document. It must be a written document which is signed and witnessed. You must be over 18 and have mental capacity at the time of writing it.

Local and national documents

Within North Bristol NHS Trust and the wider Bristol, North Somerset and South Gloucestershire NHS Trusts, the process and form used is called ReSPECT, which stands for Recommended Summary Plan for Emergency Care and Treatment.

The ReSPECT process aims to develop a shared understanding between the healthcare professional and the patient, of their condition, the outcomes the patient values and those they fear, and then how treatments and interventions, such as cardiopulmonary resuscitation (CPR) fit into this.

The ReSPECT process creates a personalised recommendation for your clinical care in emergency situations where you are not able to make decisions or express your wishes. The ReSPECT document is a dynamic document. It can be updated at any point. ReSPECT v3-1-formSPECIMENFINAL.pdf (resus.org.uk)

Other examples of advance decisions to refuse can be found on Macmillan Advance Decision to Refuse Treatment (macmillan.org.uk) or Compassion in Dying websites advance-decision-pack-v2.3.pdf (compassionindying.org.uk)

Please note: Remember all these documents (advance statement and advance decision to refuse treatment) only become valid once you are unable to make decisions yourself and/or unable to communicate (such as after a stroke, or through dementia/alzheimers and other neurological diseases…). As long as you have capacity and can communicate, you will be part of the discussion. It is good practice to review these douments every few years or when you have a change in circumstance.

Lasting Powers of Attorney

Families or close ones don’t automatically have the right to speak on behalf of their loved one or sort out their affairs for them – whether this is as simple as paying a bill or deciding how you are best cared for. It’s important to legally nominate someone to do so. Lasting Powers of Attorney (LPAs) are legal documents that allow you to choose one or more people to help make decisions on your behalf and in your best interest, should you be unable to do so physically and/or should you not have mental capacity to make decisions.

There are two types of Lasting Powers of Attorney: one for your financial affairs and one for your health and welfare. Without a Health and Welfare LPA in place, your carer – even if they are a spouse or close family member – may not have permission to make decisions in your best interest.

Benefits of Lasting Powers of Attorney:

• Peace of mind.
• Enables you to choose who makes decisions for you on your behalf.
• Enables your affairs to be taken care of when you are not able to do so, in a manner that you wish.
• Enables you to be the guide of the treatment and care you want.

Why should I make a Will?

Your Will lets you decide what happens to your money, property and possessions after your death.

If I die without making a Will – what happens?

If you die without a Will the law decides who gets what, from your estate.

These are called the rules of intestacy. The current rules around Intestacy are dependent on where the deceased lived: England and Wales or Scotland or Northern Ireland.

An inheritance order is then placed dependant on the value of the estate which varies between the different countries listed above.

To determine your potential intestacy (if you do not have a Will set up) and/or of a deceased (with no Will) refer to: www.gov.uk/inherits-someone-dies-without-will

What are the key criteria in making a Will?

For your Will to be legally valid, you must:

• be 18 or over.
• make it voluntarily.
• be of sound mind.
• make it in writing.
• sign and date it in the presence of two witnesses who are both over 18.
• ensure that the witnesses have (i) added their addresses, (ii) dated (iii) signed the Will in your presence.

Funeral planning

Most of us prefer not to think too much about the end of our lives. But, those who leave their affairs in order and have set out their wishes for their funeral, often feel a sense of control and empowerment.

Setting out your funeral wishes can also help to ease the burden for those left behind. It frees them from much of the decision making at a difficult time and enables them to feel they are doing the right thing by the person who has died. This can be a great comfort.

According to Sunlife annual reports (Sun Life annual survey 2024, 2022), half of all funerals have to be arranged without any knowledge of their deceased loved ones’ wishes. Funeral directors regularly report that families who had already discussed funeral wishes with their loved one before they died, found navigating the process easier. Writing down your wishes will help your family, giving them an appreciation of your preferences.

There is no right or wrong way to hold a funeral. What is important is that those concerned leave feeling that they have said their farewells and given thanks in a way that is right and meaningful.

You may have religious beliefs that set out what needs to happen with you funeral, or you may want to set out your own wishes. Above all, remember, it is your choice and funerals in the 21st century can be as diverse and individual as you wish. They are held at green burial grounds, crematoria, even private settings and may be traditional or something more modern.

Set out your wishes in a document and tell someone close where it is. You can decide whether you want to be buried or cremated. You can buy burial plots in advance, so that you know where your body or ashes will be interred. This includes family plots so that loved ones may rest together. Having a burial or ashes interment plot will mean there is a place where future generations can gather and know you are part of that space.

If cremation is preferred, then set out what you would like to happen to the ashes. They can be buried, retained by a family member, scattered by the family at a chosen location or the crematorium will scatter them in their gardens of remembrance. Remember you must have the landowner’s permission.

Why not decide what music you would like to have played at your funeral or a favourite poem and how you would like people to mark your death.
You could nominate a charity that may benefit from donations. To help you, you can look at the funeral section in booklet 2 When Someone Dies (page 13) this is available on the Bristol Memorial Woodland Trust’s website (bristolmemorialwoodlandtrust.org). The booklet has details of what a funeral entails. You can also use documents that have been put together to guide you.

You can find an example funeral planning document on Bristol Memorial Woodland Trust’s website (bristolmemorialwoodlandtrust.org) or if you would like a printed copy please contact the Trust on 01454 414 999 or email trust@memorialwoodlands.com.

Funeral wishes are not legally binding after death. It is, therefore, sensible to identify who you appoint to give instructions for your funeral. In that way you can feel confident that your wishes will be followed. It is also helpful, and often therapeutic, if your partner, family and/or friends can follow your wishes after your death.

Meeting your wishes is part of the grieving process for them. It is also a process in which you can consider their needs and perhaps integrate them into the funeral in some way. Perhaps someone might like to be a bearer or read a eulogy at the service.

Costs will arise in two areas. The first is ‘disbursements’; the sums you will pay to doctors (if there is to be a cremation), the burial ground, cemetery or crematorium and the minister. This might also include the cost of a venue or hospitality. The second area is the ‘funeral’ arrangements made by the funeral director, assuming you are using one.

These include the cost of collecting and looking after the body, the coffin, viewing, the hearse and cars, the flowers and order of service, funeral announcements and all the professional arrangements. If you are using a funeral director, obtain some quotes as soon as you have decided what you require.

Body Donation

Would you like to donate your body to medical research? Contact the Human Tissue Authority (HTA) Telephone 0207 269 1900 or refer to their website Body donation | Human Tissue Authority (hta.gov.uk).

Bristol University also have an anatomy body bequest service. For more information on how donated bodies are used and the consent form you need to complete please visit their website: Body bequests | School of Anatomy | University of Bristol or contact the Bequest Office directly on 0117 954 6203, or email anat-bequestoffice@bristol.ac.uk. Please note that not all body donations can be accepted; if you choose to donate your body, this will delay any funeral service (the institution concerned will usually help to fund any eventual funeral) but you can choose to arrange your own self-funded memorial at a time that suits.

South West Dementia Brain Bank – brain donation for research into dementia and neurological conditions. For further information and to register your donation please contact the South West Dementia Brain Bank office on: 0117 4147821 or by email to swdbb@bristol.ac.uk. The cost of a funeral will not be covered but the costs of donation will be.

Important Note: If you have set up pre-paid funeral plans, burial plots and/or have signed paperwork for donation of your body to medical research – always remember to share the information with relevant people along with the policy/reference numbers and documentation so that no extra costs are incurred on your behalf after your death.

Organ Donation

You may want others to benefit by donating organs after your death. Details about organ donation can be found at: www.organdonation.nhs.uk

The law about organ donation changed in 2020, it will be considered that you agree to become an organ donor when you die, if:

• you are over 18.
• you have not opted out.
• you are not in an excluded group.

You still have a choice whether or not you want to become an organ donor and can register or amend your decision at any time.

All the major religions and belief systems in the UK are open to the principles of organ donation and transplantation and accept that organ donation is an individual choice. Get information about how different faiths and belief systems view organ donations here: Your faith and beliefs – NHS Organ Donation

Tissue Donation

After someone has died it may be possible for their tissues to be donated to help others. Your loved one may have carried a donor card, be on the Organ Donor Register or may have discussed donation with you during their lifetime. Even if they did not, you may want to consider tissue donation at this time.

To ensure tissue transplants are as successful as possible, tissues can only be donated in certain circumstances:

• Heart valves can be donated up to 24 hours after death.
• Eyes for Corneal Transplantation can be donated up to 24 hours after death.

If you choose this, you will be cared for with dignity and respect and your appearance will be restored. Tissue donation will not delay funeral plans. Next of kin may be contacted by a specialist tissue donation nurse after someone dies to offer information about tissue donation. The nurse will explain the options available for tissue donation and answer any questions.

Please remember, tissue donation is entirely voluntary. If you would like further information, please contact NHS Blood and Transplant National Referral Centre on 0800 432 0559 or apply through organ donation website www. organdonation.nhs.uk. Please leave your name and contact number and a tissue donation nurse will call you back promptly.

Alternatively, you may ask a doctor, or nurse involved in your care or the care of your loved one to contact the appropriate person on your behalf.

When you register your organ donation decision, you are helping your loved ones to know what you want. Organ and tissue donation will only go ahead with the support of your family, and clinicians will never proceed with organ and tissue donation if your family or loved ones object.

Digital legacy

Consider your social media presence as well as your computer, email and online accounts. Decide which friend or relative you will entrust with dealing with your Facebook, LinkedIn, TikTok, X or Instagram accounts you have. Find a way to securely give them passwords after your death and instructions on what announcement should go on to your channels and how and when they should be shut down. For more information visit: https://digitallegacyassociation.org/

If you would like further printed copies of booklet 1: Your Own Way – Planning Ahead; or booklet 2: When someone dies – Practical and Emotional Support, please contact Bristol Memorial Woodland Trust on 01454 414 999 or email trust@memorialwoodlands.com.

This book is available electronically in Arabic, English, Polish, Romanian and Somali on the Resources page at www.bristolmemorialwoodlandtrust.org.