End of life care for Motor Neurone Disease (MND)

March 8, 2023 End of Life Care

End of life care for Motor Neurone Disease (MND)

What is Motor Neurone Disease (MND)?

Motor Neurone Disease (MND) is a life-limiting, rare condition that affects the brain and nerves. It progressively damages parts of the nervous system which causes weakness that gets worse over time. While there is no cure for MND, it is possible to manage the condition through treatments that can reduce its impact on an individual. Although MND can shorten life expectancy, some people live with the condition for many years.

MND affects up to 5,000 adults in the UK at any one time. Motor neurones control muscle activity such as walking, speaking, gripping, swallowing and breathing. As the disease progresses, doing these activities can become more difficult to do.

End-of-life care for MND is an essential aspect of managing the disease, as the symptoms can be challenging to manage during the final stages of the illness.

The purpose of this discussion is to provide an overview of Motor Neurone Disease and the end-of-life-care that may be necessary for individuals with this condition. It is important to seek professional medical advice and not rely solely on this guide for diagnosis or treatment of MND.

What can trigger Motor Neurone Disease (MND)?

Research suggests that a combination of genetic and environmental factors may play a role in triggering MND.

Some factors that may trigger or contribute to the development of MND include:

Genetic factors

One known cause of MND is an error in your genes with 20% of cases linked to genetic causes. In half of the genetic cases, the disease is present in individuals with a family history of MND, while the other half occurs in individuals without any familial link to the disease.

Environmental factors

Exposure to certain toxins or chemicals may increase the risk of developing MND, although the link between specific environmental factors and MND is not yet clear.

Age

According to NHS, Motor Neurone Disease is a rare condition that mainly affects people in their 60’s and 70’s, but it can affect adults of all ages

Gender

Studies have shown that amyotrophic lateral sclerosis (ALS), which is also referred to as motor neuron disease (MND), has a higher prevalence in men than in women. The causes of this are unknown.

Lifestyle factors

Smoking and a high body mass index (BMI) have been associated with an increased risk of developing MND.

What are the first signs of Motor Neurone Disease?

MND is characterised by a diverse range of symptoms that can differ from one individual to another. The early signs of MND may be mild and easily confused with other illnesses. Nonetheless, as time goes on, the symptoms typically intensify and become more apparent.

Here are some common early signs of MND:

Difficulty speaking or swallowing

Speech may become slurred, and swallowing may become more challenging.

Muscle weakness

One of the most common early signs of MND is muscle weakness, which may start in one limb and gradually spread to other parts of the body.

Muscle cramps and twitches

Some people may experience muscle cramps and twitching, which can be painful or uncomfortable.

Difficulty with fine motor tasks

Activities such as buttoning a shirt, writing, or using utensils may become more challenging due to muscle weakness.

Breathing difficulty

A person with MND may experience shortness of breath, especially during physical activity.

Weight loss and/or fatigue

Another common sign of MND is unexplained weight loss. A person with MND may also feel excessively tired or weak, even after rest or sleep.

How does Motor Neurone Disease progress?

As MND progresses, it causes a gradual deterioration in the ability to perform basic activities like mobility, swallowing, and breathing. This decline may require the use of a feeding tube or a face mask for breathing assistance. To ensure that individuals with this condition receive appropriate care, they should be referred to specialist end-of-life care services. Additionally, they should be encouraged to discuss their end-of-life care preferences before their ability to communicate becomes too limited.

End of life care for MND

End-of-life care for MND can include a range of services, from pain management to psychological support, to ensure the patient’s comfort and dignity in their final days.

Planning ahead

People with MND should be encouraged to talk through and discuss options for their care and preferences for end-of-life. Having the time to think everything through and knowing that their wishes have been recorded in a personalised advanced care plan gives many people peace of mind.

Advanced care planning will cover all aspects of day-to-day care. It can also include leaving special messages and memory boxes.

Talking about end-of-life care does not hasten death, rather, it helps to ensure that your wishes are known and honoured. Having conversations about your preferences for care can aid in planning ahead and give both you and your loved ones time to adjust and cope with difficult circumstances.

Supporting the family

MND is unpredictable and can progress rapidly. Death can occur more quickly than anticipated. Family members will need emotional and practical support. Any information, care plans and wishes should be shared with all involved.

Managing symptoms

Symptom management is essential in ensuring a dignified and peaceful death. People with MND may experience severe distress and/or discomfort, particularly in the later stages of the disease. The appropriate teams should consider anticipatory prescribing a range of medications for any worsening symptoms such as pain, nausea, insomnia, reduced swallowing, excessive saliva and yawning as well as breathing difficulties. In addition to managing symptoms, end-of-life care for MND patients should focus on providing emotional and psychological support for the individual and their family members.

Eating and drinking

In the final days of life, most people living with MND will stop eating and drinking. The end of life team will advise on nutrition and hydration via a mouth or feeding tube.

With this, minimal fluid intake can cause the mouth to become dry and lips to crack. The mouth should be kept clean and most. Some find ice lollies refreshing.

How do I access professional help?

In conclusion, it is crucial to plan for end-of-life when living with MND to ensure the best quality of life for the patient and their family during the final stages of the disease.

The final stages of MND are an extremely difficult time with significant losses in function and independence. There is a wide range of support available if you are diagnosed with MND. Additionally, as MND is still considered a relatively rare disease, there will be many services and teams involved in the care.

In the early stages of MND, it may be possible for a person’s family to support and care for them. However, over time, the effects of MND can be more extensive, calling for more or specialist support.

A person with MND may wish to be cared for within the safety of their home, with their friends and family close by. However, people with advanced MND may need high levels of care. This means that the demands can fall back onto the family, which can be daunting.

A specialist live-in carer will avoid the distress and disruption of moving into full-time care where possible. They can also alleviate the demands of family carers and provide an extra set of hands when using complex medical equipment, when moving and handling or doing simpler tasks such as personal care.

At Cavendish Homecare we are experts in providing live-in care and palliative home care for individuals who want to remain in their own homes. If you would like to enquire about our services, visit our website for more information.

About the Author…

Esnart Namakando

Deputy Nurse Manager RN, DNE, BSc, MSc

Esnart Namakando is a highly accomplished nurse with over 30 years of nursing experience. She dedicated 23 years to the Royal Hospital for Neuro-disability, where she rose to the role of Clinical Ward Manager, thriving in a fast-paced and challenging environment. Esnart has worked in various NHS and private hospitals in London as well as providing complex care to clients in their homes.

As the Deputy Nurse Manager at Cavendish Homecare, Esnart draws on her extensive expertise in neurological rehabilitation, stroke care, palliative & end-of-life care, Parkinson’s care and Dementia support. Esnart also specialises in delivering comprehensive training on subjects such as PEG feeding, stroke care, and falls prevention.

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