Planning ahead with MND can be emotionally challenging. As MND is a life-shortening disease, discussions about the future include thinking about end of life decisions. This can feel difficult, but planning how you want things to happen helps ensure your wishes are respected. When you feel ready, select from the following to find out more.
“Once you’ve done it, you can put it away in a cupboard. You can relax…and you feel better for doing it.” Person with MND
Palliative and hospice care services are designed to help people with life-shortening conditions. Due to this, they are often thought to be about the final stages of life, which can cause a sense of fear. This may even prevent some people from accessing this type of support.
However, the main aim of palliative and hospice care is to achieve the best possible quality of life for you and those close to you. It cannot make you better, but it can make things easier. For most benefit with MND, this care should begin at the point of diagnosis, where appropriate.
You can ask to be referred by your GP. There may be a waiting list, but an early referral is helpful.
Once referred, you gain access to a variety of additional services, not necessarily available with your usual healthcare. These additional services may help you manage the pathway of care more effectively.
Palliative care teams and hospices can do a great deal to improve your wellbeing, including:
- managing symptoms
- emotional, psychological and spiritual needs
- practical and financial guidance
- help with decision making
- assistance to help the whole family cope.
The professionals involved will probably include many of your existing health team, but also specialist palliative care professionals, trained to offer specific support with life-shortening conditions.
Palliative and hospice care can be offered in a variety of settings, depending on your needs and the services available. These locations may include your home, a residential or nursing care home, a hospice, hospital or day therapy clinic.
You would normally receive these services as an outpatient, which means you would not have to stay overnight. However, there may be some occasions where you stay, for symptom management.
The earlier your relationship with a specialist palliative care or hospice team begins, the more support you can be given. If your team can build a comprehensive picture of your individual needs, this may also help reduce or shorten any stays in hospital, should you need to be admitted for treatment.
Care received from a specialist palliative care team and a hospice team is very similar. The main difference is that a hospice team is linked to a specific hospice, which is usually a charitable Trust. Volunteers may be involved at the hospice, but all medical care is still provided by NHS clinical professionals.
Find more information about palliative care services in our information sheet 3D – hospice and palliative care.
End of life care concentrates on identifying your needs, and those of your family and carers, during the last year of life. This still includes palliative care services (see section above), but the main focus is to support your needs, wishes and preferences as you approach death. The aim is to help you live as well as possible and to die with dignity.
This type of care looks carefully at your choices and there are various ways in which you can help control the way things happen. See the section below on How do I make and communicate my decisions? to find out more.
Future care and end of life decisions are sensitive subjects that many people find difficult to explore. You may not feel ready for this yet, but we are here to help when you do. If you have any immediate concerns, please contact our MND Connect helpline for guidance and support.
It is also important to ask the health and social care professionals who support you for guidance. They can help you feel as informed as possible about your options and explain what is likely to happen. This can help reduce fear. Ask about how your symptoms will be managed as the disease progresses and the type of treatment you may receive. You may also wish to ask about how treatment can be withdrawn if you feel it has become a burden or is no longer working. For more information, see How can I check if my treatment and care are appropriate?
You may find our End of life guide helpful. Following extensive feedback from people living with or affected by MND, this guide was developed to answer questions about a wide range of end of life decisions. It also suggests ways to open difficult conversations with professionals and those close to you.
The guide explores how to record advance plans, advance decisions or give power of attorney to a trusted adult to make decisions on your behalf. These approaches can help guide professionals and all those involved in your care.
Instructions about your future care could become important, as MND can affect speech and communication, and for some people, it can affect how you think and process information. If you become unable to make decisions in the future, or communicate for any reason, written guidance may help ensure your wishes are respected. Being informed about how to do this can help you make choices that feel right for you and help your loved ones feel better prepared.
The guide also includes how to put your affairs in order, such as financial records and making a will.
We also provide information sheet 14A about making an Advance Decision to Refuse Treatment (known as an ADRT). An ADRT is a legally binding document that helps guide professionals about treatments you wish to refuse or withdraw in the future in specific circumstances. The information sheet includes a sample completed ADRT form and a blank form to print and fill in if you wish. There is also an interactive version of the form to download and complete onscreen if preferred.
If you need further guidance on how ventilation can be withdrawn, our information sheet 8C – Withdrawal of ventilation with MND provides explanations, and questions you can raise with the professionals in support.
You can legally appoint one or more representatives (a family member, friend or professional) to make decisions on your behalf.
England and Wales
In England or Wales, this is called a Lasting Power of Attorney (LPA), which requires a legal document to be registered with the Office of the Public Guardian (OPG). You will be charged a registration fee.
An LPA can be used to manage either one or both of the following:
- property and finance decisions (should you agree, this can be used by the appointed person even if you can still make decisions yourself)
- health and personal welfare decisions (which can only be used if you become unable to decide or communicate for yourself). You can include decisions about life-sustaining treatment in the health and personal welfare section if you wish, but this has to be specific.
If created in England or Wales before 2007, power of attorney is called an Enduring Power of Attorney (EPA). An EPA can only be used for property and finance decisions.
Enduring Power of Attorney (EPA) is used in Northern Ireland and registered through the Office of Care and Protection. This only enables decisions on your behalf concerning property and finance, not personal welfare or care-related matters.
It is not possible to create LPAs in Northern Ireland.
You can find the forms to create an LPA or EPA online, through the Offices linked above. However, these can take time to complete and there is a lot to think about.
Legal advice is recommended, as the law that governs power of attorney is complex. There will be a charge for this service, in addition to the registration fee for the power of attorney.
A qualified legal professional can advise on the creation, registration, and use of powers of attorney. This will include safeguards and protections to help you and the person you appoint as your representative. This can help avoid possible problems.
We provide more detail about power of attorney and other advance care planning in Section 9: Advance care planning and advance decisions from our End of life guide.
See also our information sheet 14A – Advance Decision to Refuse Treatment and advance care planning.
If you applied for registration of an LPA or EPA power of attorney from 1 April 2013 to 31 March 2017, you can reclaim part of the application fee before 1 February 2021. See www.gov.uk/power-of-attorney-refund
The word legacy is commonly used to describe something that you own, which you leave to someone after your death. We often forget that we also ‘own’ and can pass on our digital information.
Digital legacy is a term that can be used in two different ways. It can refer to:
- any online record, document or account in your name
- an online site, image collection, video or sound recording by yourself to share messages and memories with loved ones.
Digital legacy – online records
All records or communications that you keep online, in your name, are part of your digital legacy. These may contain financial, legal, personal or social content. You may need to consider what will happen to these records after your death, especially if any of them have financial value that could impact on the administration of your estate.
Digital legacy – recording of memories
Messages and memories can be recorded for loved ones in many ways. These might include letters, printed photographs, keepsakes, memory books and boxes.
However, a digital legacy enables video and audio recordings too. For many family members and friends, this can be comforting when someone has died. Various websites and apps can assist with this, such as the free app RecordMeNow, which provides prompts and questions to make recording feel easier.
Membership on social media sites and writing blogs can also provide a way of recording lasting images and video clips. However, you may need to consider what happens to these after your death if you no longer want them to be viewed. For more detail, see the Digital Legacy Association.
The below short video (a Nature Outlook video production 2017) explores how digital legacy can help you.
The video below shows an example of the type of support that may be provided at a hospice. Please note this video is based at a hospice in Dorset. The support offered can vary across hospices, but is usually quite similar.