Quality statement 5: Planning for end of life care

Quality statement

Adults with motor neurone disease (MND) are given opportunities to discuss their preferences and concerns about end of life care at diagnosis and key stages of disease progression.

Rationale

MND can present in different ways and the prognosis may be variable, but the majority of people with MND die within 2–3 years of diagnosis. Discussions about end of life are difficult, but sensitive discussions can address concerns and result in increased support, control and choice for the person and their families and carers. Such discussions can take place at any time, but there are particular times when people should be given the chance to discuss the topics. These times include at diagnosis, if there is a significant change in respiratory function, or if interventions such as gastrostomy or non‑invasive ventilation are needed. Early planning for care at the end of life also ensures that families and professionals can be made aware of a person's wishes for end of life care before communication or cognitive changes make this difficult or impossible.

Quality measures

Structure

Evidence of local arrangements to ensure that adults with MND are given opportunities to discuss their preferences and concerns about end of life care at diagnosis and key stages of disease progression.

Data source: Local data collection.

Process

a) Of adults with MND, the number given opportunities to discuss their preferences and concerns about end of life care at diagnosis.

Data source: Local data collection based on extracts from or reviews of individual care records. At provider or clinical commissioning group level, data collection will involve small numbers.

b) Of adults with MND, the number given opportunities to discuss their preferences and concerns about end of life care at key stages of disease progression.

Data source: Local data collection based on extracts from or reviews of individual care records. At provider or clinical commissioning group level, data collection will involve small numbers.

Outcome

a) Adults with MND feel they have choice and control over their end of life care.

Data source: Local data collection.

b) Adults with MND receive end of life care informed by their wishes and preferences if they lose the ability to communicate.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (such as MND multidisciplinary teams) ensure that healthcare professionals are able to provide support and advice on advance care planning for end of life to people with MND and their family members and carers, and that they give people with MND the opportunity to discuss their preferences and concerns about end of life care at diagnosis and key stages of the disease progression.

Healthcare professionals (such as members of the MND multidisciplinary team) ensure that they give people with MND the opportunity to discuss their preferences and concerns about end of life care at diagnosis and key stages of the disease progression. Healthcare professionals should ensure that they are sensitive about the timing of discussions and take into account the person's current communication ability, cognitive status and mental capacity.

Commissioners (such as clinical commissioning groups and NHS England) ensure that they commission services that have staff that are able to provide support and advice on advance care planning for end of life to people with MND and their family members and carers.

What the quality statement means for patients, service users and carers

Adults with MND are asked if they would like to talk about any concerns they have about dying and what they would prefer to happen (or not happen) at the end of their life.

Source guidance

Definitions of terms used in this quality statement

Discuss preferences and concerns about end of life care

Discussions should involve providing support and advice on advance care planning for end of life to the person with MND and their family members and carers (as appropriate). The discussion should include:

  • what could happen at end of life, for example how death may occur

  • providing anticipatory medicines in the home

  • advance care planning, including Advance Decisions to Refuse Treatment and Do Not Attempt Cardiopulmonary Resuscitation orders, and Lasting Power of Attorney

  • areas that people might wish to plan for, such as:

    • what they want to happen (for example preferred place of death)

    • what they do not want to happen (for example being admitted to hospital)

    • who will represent their decisions, if necessary

    • what should happen if they develop an intercurrent illness.

Sensitivity is needed regarding to the timing of discussions, and the person's current communication ability, cognitive status and mental capacity should be taken into account.

[Adapted from Motor neurone disease (NICE guideline NG42), recommendations 1.7.1 and 1.7.3]

Key stages of the disease progression

Key stages of the disease progression include significant changes in the condition of the person with MND, and the trigger points set out in the guideline recommendation:

  • when there is a significant change in respiratory function

  • when interventions such as gastrostomy or non‑invasive ventilation are needed.

[Adapted from Motor neurone disease (NICE guideline NG42), recommendation 1.7.1 and expert opinion]

Equality and diversity considerations

People with MND can experience cognitive problems. About 10% of people with MND show signs of frontotemporal dementia and a further 35% show signs of mild cognitive change. Cognitive or behavioural change does not mean that a person with MND will no longer be able to make decisions but rather that care should be provided in a way that accommodates the cognitive or behavioural changes. This could include allowing more time for decision making and an understanding of behaviour change. All information provided should be accessible, as far as possible, to people with cognitive problems. People receiving information about MND should have access to an interpreter or advocate if needed.