Planning ahead the end of life

Below, two health care professionals talk about how essential it is to plan ahead.

Planning ahead to ensure that support is in place when they need it is essential. It’s important to ensure that the individual wishes of the patient are discussed. It’s vital that these conversations happen in the early stages of the disease, even though this can be distressing.

Advance care planning

People with MND should be encouraged to discuss what they would like to happen if they are unable to make decisions or communicate for themself. All their wishes should be recorded in an advance care plan. An advance care plan is not legally binding – it should be as comprehensive as the person feels it needs to be and clearly reflect their priorities, so for example, it could well include who will look after a pet when they become incapable of doing so and after they have died.

Other things which might be included are:

• special requirements for food and drink
• how any spiritual and religious beliefs should be reflected in their care
• their preference for who will provide personal care
• preferred place of death.

Advance statement

An important principle of care is that patients feel in charge of what is, and what isn’t, done to them. An advance statement written record of a person’s preferences, wishes, beliefs and values for future management, medical choices and care, including where the person would like to be cared for and where they want to die. It is designed to guide anyone who might have to make treatment and management decisions if the person has lost the capacity to make or communicate their own decisions. Advance statements may be included within an advance care plan, but can also stand alone.

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.

Advance decision to refuse treatment (ADRT)

When completed correctly as part of advance care planning these are legally binding documents. In an ADRT people make their treatment preferences known in advance in case they can’t communicate their decisions later on in the illness. Issues that can be covered include:

• whether the person wants to be treated at home, in a hospice or in a hospital once they reach the final stages of motor neurone disease
• the type of medication they’d be willing to take in certain circumstances
• whether they would be willing to consider a feeding tube if they were no longer able to swallow food and liquid
• if they have respiratory failure (loss of lung function) in the latter stages of MND, whether they wish to be resuscitated by artificial means, such as having a permanent breathing tube inserted into the throat (known as a tracheostomy)
• whether they’d be willing to donate any organs after death (the brain and spinal cord of people with MND are very important for ongoing research)
• Do Not Attempt CPR (DNACPR)

As a member of the person’s care team, you may be involved in the discussions around making an ADRT and providing them with information and advice. These discussions should include the people important to the person with MND wherever relevant. The MND Association has a guide to ADRT and out RCN ‘Getting it right every time’ end of life care resource has information on ADRT which you might find helpful.

One day at a time

Anticipating future needs is really important as the disease progresses so quickly, however you need to recognise that managing the disease is also done one day at a time. Changes to the person’s physical health and mental and emotional wellbeing occur so rapidly that it can change individual needs in a day.

End of life care

Preparing for end of life involves not only considering care and treatment but also about the person’s finances, what arrangements are in place for the family they leave behind, helping them to arrange their affairs so that when they die the people important to them understand what is in place and where to find things. Practical things such as passwords and account details are often forgotten and can cause huge complications and additional distress to those trying to organise someone’s affairs after they pass away.

Some people may want to leave some form of message for people they love, particularly if they have young children. These are particularly important if someone loses the ability to speak and can be recorded while they still have a voice as well as in written or digital form.

Hospices offer palliative and end of life care to people with MND. Some nursing homes may be able to provide good support to someone with MND if they are not able to remain at home. Caring for people dying with MND is hard for everyone involved and it is important that support is provided to formal and informal carers.

You might find our RCN End of life, fundamentals of nursing care resource helpful, as well as the End of life care guide by the MNDA. The NCPC have produced a really good booklet on Having difficult conversations with people with MND however, there is a cost for this.