Planning ahead for end of life
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord.
People with MND should be encouraged to talk through options for their care and preferences for end of life with their GP or an appropriate member of their specialist team, before the need is urgent or before they find it too difficult or tiring to communicate.
Having time to think things through and knowing that wishes have been recorded in an advance care plan gives many people peace of mind.
All professionals involved in the care of the person with MND should be aware of any decisions that have been made and any changes made to these.
If discussions are held and decisions made around preferences for end of life, ideally they should be brought together in a personalised advance care plan.
An advance care plan can be wide-ranging, covering all aspects of day-to-day care including, as examples, who should provide personal care and how they should do it, special requirements for food and drink, decisions about artificial feeding, ventilation, resuscitation, use of antibiotics, place of care and preferred place of death, and other issues such as care of dependants or pets in an emergency.
Also included in this may be leaving special messages for friends and loved ones, and memory boxes or books for children.
The process for advance care planning, the documentation used and who needs to have this documentation will vary between areas. Many places will have end of life care coordinators or facilitators.
Usually included in or with an advance care plan, an advance statement is a written statement of a person’s preferences, wishes, beliefs and values for future management, medical choices and care. It can cover any aspect of health and social care, including where the person would like to be cared for and where they would prefer to die. It is designed to guide anyone who may have to make treatment and management decisions if the person has lost the capacity to make or communicate their own decisions.
Even though advance care plans and advance statements are not legally binding, they still guide on advance decisions. Health professionals should take the recorded preferences into account as part of an overall judgement of best interests, and they should be honoured where possible.
Sometimes referred to as an Advance Decision, this is a decision that can be made in advance to refuse specific treatments (including those that may sustain life) in certain circumstances in future.
Before making an ADRT, the person should discuss the contents with an appropriate professional – usually the GP, specialist nurse or neurologist – to ensure they are clear about which treatments they wish to decline and that all treatments being refused are named.
The person with MND should have a full understanding of the possibility of discomfort and risk to their life. An ADRT cannot authorise a doctor to do anything illegal, such as euthanasia, but it can enable someone to refuse something that prolongs their life (eg artificial feeding or antibiotics). The person will still have the right to primary care and comfort.
The ADRT is not valid unless the person has lost the ability to make decisions or communicate. Every opportunity should be given to help the person to communicate, for example by blinking. An ADRT is legally binding. It should be regularly reviewed in case the person changes their mind. See the NHS guide for professionals on ADRT, or the MND Association’s End of life guide.
Cardiopulmonary resuscitation (CPR) is the procedure used to try to restart the heart or breathing when it stops. A person can record a wish for Do Not Attempt CPR (DNACPR). This is not legally binding but in most cases an appropriate healthcare professional will make a judgement depending on the circumstances.
In England and Wales, someone can include a DNACPR in their ADRT, which is legally binding. All relevant professionals, including the ambulance and out-of-hours service, should be aware of the DNACPR. It will be valid in the person’s home, hospital and other care settings.
Any decisions made about advance care should be regularly reviewed, to reflect that people do change their minds. This can be difficult when someone’s condition advances, as problems with communication can make it more problematic to identify any changes in wishes. If changes are made, new copies should be signed and dated and distributed to those who hold the existing paperwork.
Find out more
More information can be found in our booklet for health and social care professionals:
- A professional's guide to end of life care in MND
- End of life guide for people with and affected by MND
- NICE Guideline 42 – Motor neurone disease: assessment and management