Planning ahead

Palliative and hospice care services help people with life-shortening conditions. Often, they are seen as end of life services, which can cause a sense of fear. This can prevent some people from accessing this type of support.

Yet, palliative and hospice care is designed to help you and those close to you achieve the best possible quality of life. It cannot make you better, but it can make things easier. To get the most benefit from this type of care, ask your GP for guidance as soon as possible after diagnosis.

How can I get palliative or hospice care services?

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 extra services that may not be available through general healthcare. These additional services may help you manage the pathway of care more effectively.

Palliative and hospice care includes support to:

• manage symptoms
• help with emotional, psychological and spiritual needs
• find practical and financial guidance
• make informed decisions when planning ahead
• 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.

Where can I receive this care?

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 picture of your individual needs, this may also help reduce or shorten any future stays in hospital.

Specialist palliative care and hospice care are 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.

See our End of life guide for wider information to help you with planning ahead.

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.

See our End of life guide for information to help you with decision making.

Providing instructions about your future care could become important, as MND can affect speech and communication. For some, it can also affect thinking and how you process information.

In case you become unable to make decisions in the future, or communicate for any reason, you can provide written guidance in advance. This can help ensure your wishes are respected. Being informed about how to do this can help you make choices that feel right for you. It can also help your loved ones feel better prepared.

Who can help?

Planning ahead for future care and making end of life decisions can be difficult to explore. We are here to help when you feel ready. If you have any immediate concerns, please contact our MND Connect helpline for guidance and support.

It is important to ask for guidance from the health and social care professionals who support you. 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 information about appropriate support, see Getting the right treatment or care with MND.

What information can help?

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 end of life decisions and:

• suggests ways to open difficult conversations with professionals and those close to you
• explains what to expect in the later stages of MND
• looks at how to put your affairs in order, such as financial records and making a will
• explores how to record advance plans, advance decisions or give power of attorney to a trusted adult to make decisions on your behalf
• helps understanding of your needs and options for professionals and all those involved in your care.

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.

Our information sheet 8C – Withdrawal of ventilation with MND provides explanations, and questions you can raise with the professionals in support.

If you do not have immediate support at home, see our booklet, Living alone with MND or Kennedy's disease. This can help you think ahead. Our MND Checklist may also be useful for earlier planning around care support.

You may wish to wear or carry an MND alert in case of emergency. This lets medical staff know you have MND and that you may be at risk with oxygen therapy. Other alerts can help guide your care. See below:

MND Alert Wristband

A silicon wristband to alert emergency teams that you have MND. It warns that you may be at risk with oxygen and gives a web link to details for professionals. Order your wristband from our MND Connect helpline.

MND Alert Card

A small card from the MND Association for your purse, wallet or pocket, to alert hospital staff that you need specialist help for MND. Order the printed card form our MND Connect helpline, with space on the back to write key contacts. You can also download an image of the MND Alert to use on your mobile device.

Understanding My Needs

A write-on booklet from the MND Association to help you record your care needs and preferences. This helps guide medical staff or care workers about your care. Download the interactive form to complete Understanding my needs on your screen. Order the printed booklet from our MND Connect helpline.

Carer’s Emergency Card

For a carer to carry in case they are away from home and unable to support you. It provides an alert that you need support. The cards are usually available from your local authority, who can then help should an emergency arise.

MedicAlert

Bracelets or necklets that you can purchase and wear to identify your medical condition or allergy. The scheme is supported by a 24-hour emergency telephone service. Find out more at MedicAlert.

MND Just in Case Kit

A box that you keep at home, that holds medication for emergency medical professionals if a person with MND experiences sudden breathlessness, coughing or choking. This resource can only be ordered by the person's GP, who prescribes the medications kept in the box. GP's can contact our MND Connect helpline with queries. Contact your GP or specialist team if you feel you may benefit from having a kit nearby. GPs can see our information sheet for professionals about the MND Just in Case Kit, for more detail.

Message in a Bottle

Stickers on your fridge, and inside your front door, tell paramedics to look for a bottle in your fridge, that contains personal and medical details. Bottles are free from your local chemist. For details, search for message in a bottle at Lionsclubs.

Make important documents easy to find

Make documents like Advance Decisions to Refuse Treatment (ADRT) easy to find in an emergency. Don’t lock them in a safe, as paramedics need to see these to carry out your wishes. If you use the Message in a Bottle scheme, you could add a note in the bottle about where to find your medical documents.

You can legally appoint one or more representatives (a family member, friend or professional) to make decisions on your behalf. This is called power of attorney.

England and Wales

In England or Wales, this is done using 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.

Northern Ireland

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.

Legal guidance

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.

Information resources

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.

See also the video at the bottom of this page.

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.

See Section 8: Putting affairs in order in our End of life guide, for examples of what to think about. For more detail, see the Digital Legacy Association.

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.