Advance Care Planning is an umbrella term covering personal, legal, clinical, and financial planning. It enables a person to think about what matters to them and plan for their future.

It is a voluntary process and helps a person to make known what their wishes, feelings, beliefs and values are, and to make choices that reflect these.

Advance Care Planning is an on-going process of conversations between a person, those important to
them and those providing care, support or treatment.

Advance Care Planning should be an important part of life for all adults.

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Death and dying are inevitable. Being able to live as well as possible until we die is something that we all value. The needs of people of all ages who are living with a life-limiting condition, terminal illness or bereavement, must be addressed, taking into account thier priorities. Personalised care in the last year(s) and months of life will result in a better experience, tailored around what really matters to the person, and more sustainable health and care services.

Palliative care is defined by the World Health Organisation as an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-limiting illness, usually progressive. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems whether physical, psychosocial or spiritual.

End of life care is support for people who are in the last months or years of their life. End of life care should help you to live as well as possible until you die and to die with dignity.

Advance Care Planning is an umbrella term covering personal, legal, clinical, and financial planning. It enables a person to think about what matters to them and plan for their future. It is a voluntary process and helps a person to make known what their wishes, feelings, beliefs and values are, and to make choices that reflect these.

Advance Care Planning is an on-going process of conversations between a person, those important to
them and those providing care, support or treatment.

Advance Care Planning should be an important part of life for all adults.

For further information refer to the links below:

Advance decision to refuse treatment (living will)

What is an advance statement?

An advance statement is a general preference about your treatment and care. It isn’t legally binding, but medical professionals should still make a practical effort to follow your wishes.

The Mental Capacity Act states that decisions about your care and treatment should be made in your ‘best interests’. Your advance statement can reflect your views, beliefs and values. This information will be useful when people make decisions that affect you. An advance statement is also known as a ‘statement of wishes’.

What is an advance decision?

An advance decision gives you the legal right to refuse specific medical treatment in future. This is when you may not have the mental capacity to make the decision for yourself at that time.

An advanced decision is legally binding. But Health professionals don’t legally have to follow an advance decision if you are in hospital under the Mental Health Act. See the section below for more information.

An advanced decision can’t be used for anything else. For example if it has information about what treatment you want, health professionals don’t have to follow it. This information will be treated the same as an advance statement.

Your decision must be clear to be legally binding. Legally binding means it is against the law if health professionals don’t follow it.

You must be 18 or older and have mental capacity to make an advance decision.

An advance decision is also known as an ‘advance directive’.

For further information on a living will please follow this link:

ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. 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 plan is a nationally recognised and agreed plan that is used in Gloucestershire to record ‘what matters’ to individuals, their values and fears to enable healthcare professionals to indicate what clinical treatment that person may want in an emergency situation or approaching the end of their life.

The ReSPECT plan also records a person’s resuscitation wishes and whether or not an attempt at cardiopulmonary rescusitation (CPR) is recommended if the person’s heart and breathing stop. A ReSPECT conversation is much more than a CPR discussion.

Who is ReSPECT for?

This plan can be for anyone, but will have an increasing relevance for people who have complex health needs, people living with frailty, dementia or a learning disability. People who are likely to be nearing the end of their lives, and people who are at risk of sudden deterioration or cardiac arrest.

To learn more about ReSPECT, watch the video below and follow Joe’s journey through the ReSPECT Process.

For further information on the ReSPECT process please follow this link:

If you are living with or supporting someone with a learning disability you may find you need help to ensure additional needs in palliative and end of life care are understood and considered.

Watch John’s Story – Understanding ReSPECT with a terminal diagnosis

Planning ahead and having a ReSPECT conversation early in someone’s life helps professionals such as ambulance crews, out-of-hours doctors, care home staff and hospital staff will be better able to make immediate decisions about a person’s emergency care and treatment if they have prompt access to agreed clinical recommendations on a ReSPECT plan.

A ReSPECT plan is not just for people who are palliative and approaching the end of the lives. It’s to help and support people to live their lives well for as long as they are able. This plan is to record what matters to you and agreed realistic recommendations for emergency situations, whatever stage of life you are at.

Watch Jenny’s Story – Understanding Respect the Annual Health Check

For easy read documents about the ReSPECT process please follow this link (Resus.org.uk) and open up supporting files.

For further information on support available please follow the links below:

Making plans for your future care and deciding who would speak on your behalf if you were unable to do so is called advance care planning. This is a set of wishes that can be referred to should something happen to you and you did not have the mental or physical capacity to make decisions for yourself. It takes between 5-10 minutes to document your future care wishes within an advance care plan. Carrying out this task now might help ensure that your health and social care wishes are adhered to.

The goal of MyWishes is to ensure that everyone documents what they would like to happen to their physical estate, their digital estate, the care they may require in the future, and the care of any dependents they may have (children, pets etc).

MyWishes provides a range of online tools that generate both legally and non-legally binding forms. Once completed, documents can be downloaded, printed, emailed and shared with loved ones, healthcare professionals and funeral directors.

For further information on MyWishes please visit:

No one ever plans to be sick or disabled. Yet, planning for the future can make all the difference in an emergency and at the end-of-life. Being prepared and having important documents in a single place can give you peace of mind, help ensure your wishes are honored, and ease the burden on your loved ones.

Making a Will

Making a Will allows you decide what happens to your money, property and possessions after you die. You can also use a Will to decide who should look after any children under 18. For further information on how to make a Will, and what happens if you don’t have a Will, please follow this link:

Power of Attorney – Financial/Health

A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf.

This gives you more control over what happens to you if you have an accident or an illness and cannot make your own decisions (you ‘lack mental capacity’).

For further information on LPA, please follow these links:

Planning a Funeral

You may want to make decisions about what happens after you die, including planning your own funeral. Not everyone wants to do this.

Having conversations and planning ahead can help people close to you celebrate your life in a meaningful way. This page covers things to consider when planning, including paying for the funeral, and who to tell about your wishes. For further information please follow this link:

Digital Legacy

A Digital Legacy is the digital information that is available about someone following their death. Someone’s Digital Legacy is often shaped by interactions the person made and information that they created before they died. This might include their social media profiles, online conversations, photos, videos, gaming profiles and their website or blog.

For further information on digital legacy please follow see these links:

It can be helpful to think about where you would like to be cared for and who can help with your care for if you become unwell.

Equipment & Alterations

If you are discharged from hospital and need equipment it will be provided to you, but other equipment needed to help you stay in your own home may need to be self-funded.

Access to equipment and adaptations can be either through Adult Social Care by calling 01452 426868 or through Integrated Community Teams.

Roles and responsibilities can vary across teams, but in general:

  • Community and District Nurses can order hospital beds, small aids and pressure care e.g mattresses, cushions.
  • Physiotherapists can order equipment to help you mobilise e.g walking stick, zimmer frame, wheelchairs.
  • Occupational Therapists (OT) can order all equipment including to help with washing yourself and riser-recliner chairs as well as mobility equipment such as wheelchairs.

OTs can also arrange for rails, ramps, wet rooms, stairlifts and other larger adaptations to a patient’s home; these assessments tend to be done by OTs working for social services, you can refer to Adult Social Care by calling 01452 426868.

Some of these items require no payment, some require a financial contribution towards the total and some will need to be completely funded by the person. The OT will explain this to the individual as part of the assessment process. Larger adaptations can take some time to plan and organise and may not be ready by the time a person is discharged home from Hospital.

For further information on how equipment is issued in the community in Gloucestershire please follow these links:

For access to other equipment to buy or hire including wheelchairs please see links below:

Domiciliary and home care

Care at home (also known as domiciliary care) is help which is provided in people’s own homes.

When considering care options for yourself or a loved one, understanding the difference between domiciliary care and home care is essential, particularly for those seeking financial advice and strategies for avoiding care home costs. Home care support typically refers to non-medical assistance provided by caregivers who visit your home, offering help with daily activities, companionship, and household tasks.

On the other hand, domiciliary care is a broader term that encompasses both medical and non-medical support services, allowing individuals to receive professional care while staying in their own homes. Domiciliary care may include services such as home nursing, therapy, or specialised medical support.

If you are elderly or disabled and need help and support with everyday tasks like feeding, bathing, getting in and out of bed, dressing and undressing, and want to remain in your own home, a home care worker might be able to help you.

Domicillary and home care agencies can provide home care workers to help in your own home.
Remove the (sometimes known as personal assistants) as these are different to home care workers. Domicillary and home care agencies can provide home care workers to help in your own home.

For further information please contact Adult Social Care on: 01452 426868.

Or by following the links below:

Care homes

Care homes provide comfortable accommodation and have trained staff on hand to look after your needs day and night. All care providers in the country must be registered with the Care Quality Commission (CQC). There are two main types of care homes: residential and nursing:

  • Residential homes are for people who need support 24 hours a day and can no longer cope at home but don’t need nursing care. These homes provide personal care, such as help with bathing, dressing, feeding and help with moving.
  • Nursing homes provide the same level of care as care homes but also have trained nurses on duty to provide skilled nursing care where it is needed.

If you or someone you care for is thinking about making a care home your permanent place of residence, contact the Adult Social Care helpdesk in the first instance. We can talk you through the assessment process and how to choose a care home.

Care and financial support

People living with a terminal illness may be able to apply for some benefits under special rules. The special rules vary depending on which benefit you are claiming, but could mean you:

  • get faster, easier access to some benefits
  • get the highest rate of some benefits
  • do not need to have any medical assessments.

To apply under the special rules, a healthcare professional needs to complete a form to confirm that you have a terminal illness. This form is called an SR1. Please click on the links below “what is an SR1 form” and “How to get benefits if you are terminally ill” for more information.

Some people will also be eligible for NHS funding to provide care or equipment they may need urgently in the last weeks of their life. This is called Fast Track Continuing Health Care (FTCHC) funding. Please see the ‘Fast track pathway tool’ section in the ‘NHS continuing healthcare and NHS-funded nursing care’ leaflet below.

The link to Gloucestershire County Council Adult Social Care will direct you to information on their ‘Paying for your social care’ pages about finances when someone is in receipt of a social care package but is not eligible for NHS funding.

For further information on financial support, please follow these links:

In Gloucestershire we are working together to improve services for adults, children and young people who require palliative and end of life care.

If you have any questions about Children and Young People’s palliative and end of life care in Gloucestershire, please email the Paediatric Palliative Care Team at:
ghn-tr.paediatricpalliativecare@nhs.net.

Please click on the link below to go to the Children and Young Adult’s Advance Care Plan Collaborative page. This page contains the ReSPECT compatible version of the Child and Young Person’s Advance Care Plan (CYPACP) document (approved by NICE Guidelines).

For access to ReSPECT guides for young people and parents please see further links below:

  • This guide for young people explains the ReSPECT process and how it fits in with the plans we make with you, about your care and treatment in a future emergency.
    ReSPECT Patient Guide Young People
  • This guide for parents explains the ReSPECT process and how it fits in with the plans we make with you, about your child’s care and treatment in a future emergency.
    ReSPECT Parent Guide

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