Multiple Sclerosis (MS) is a complex neurological condition that can cause disability. For many people, they will continue to live well with MS. However, for some, they may have advanced MS.
When people are living with advanced MS, this means they are severely affected by their MS. Usually, this occurs very slowly after many years since diagnosis. People with advanced MS may have complex needs and require support every day from other people to manage their daily activities. A diagnosis of MS does not mean that you will have a shortened life expectancy, and it is not a terminal condition.
There are three main types of MS:
Relapsing Remitting Multiple Sclerosis (RRMS),
Secondary Progressive MS (SPMS) and
Primary Progressive MS (PPMS),
You can have advanced MS with any type of MS. There can be confusion about the difference between progressive MS and advanced MS. Progressive MS is a distinct type of MS, with a lack of relapses and a gradual accumulation of disability over time.
Advanced MS is a stage in the progression of the disease marked by the accumulation of severe and persistent symptoms. It's important to understand that advanced MS reflects the level of difficulties a person may face, rather than being a distinct type of MS.
Advanced MS is considered if you have frequent, multiple MS symptoms occurring at the same time, need support from others every day for some or all of your care needs and have a high level of physical impairment.
Symptoms of advanced MS
Weakness which may impact on standing, or on grip and having difficulty with eating and drinking without assistance
Severe pain
Spasms and spasticity which impact on walking
Unable to walk without aids or a wheelchair for most of the time, due to impaired balance and mobility problems
Bladder and bowel problems that require supports such as permanent catheterisation
Tremor and lack of coordination
While these symptoms can occur at any stage of MS, they are typically more pronounced and occurring at the same time for people with advanced MS. Many of these symptoms can be difficult to treat, such as managing severe pain, and it is important to maintain regular monitoring of your symptoms with your healthcare team, for yourself and your family members or carers who help you.
Living with advanced multiple sclerosis can pose unique challenges, often raising questions about life expectancy. While there's no definitive timeline for people with advanced MS, it's a topic best explored with your neurologist and healthcare team. Several factors may influence the progression of advanced MS, including the severity of your MS, overall health, access to healthcare services, and lifestyle choices such as diet and exercise, alongside adhering to MS brain health recommendations.
Initiating
effective disease-modifying treatment (DMT) early in the MS diagnosis, under
the guidance of your neurologist, may significantly impact disease progression.
These treatments aim to slow down the advancement of MS and reduce the
frequency and severity of relapses.
If
you are living with advanced MS, personalised care is crucial, recognising the
uniqueness of everyone’s experience. Regular assessment and monitoring with
your healthcare team are vital aspects of managing advanced MS. While it can be
challenging not to focus solely on MS symptoms and progression, prioritising
overall wellbeing—embracing emotional and social aspects—is equally vital.
There
are a range of support services to help in managing advanced MS, and this is
best discussed with your healthcare providers to have supports tailored to your
needs. Focus areas may include support to manage symptoms,
advanced
care planning, and access to palliative
care. It's important to note that palliative care can be provided at any
point in someone’s condition and is not limited to end-of-life care. Sometimes,
people can access short-term palliative care.
In
navigating the complexities of advanced MS, remember that you're not alone.
Your healthcare team is here to provide guidance and support every step of the
way, ensuring your journey is as comfortable and well-supported as possible.
Most people living with MS will not experience any shortening of their life expectancy due to their MS.
End-stage multiple sclerosis (MS) refers to the advanced phase of the disease where people experience severe symptoms and impairment, leading to significant difficulties that may not respond effectively to usual management and treatments. This stage is often marked by life-shortening complications, and it may necessitate compassionate end-of-life or palliative care. In clinical practice, it can be very difficult to determine when advanced care becomes end-stage, so it is not common to hear these terms used.
Advanced MS, on the other hand, is a broader term indicating a stage in the progression of MS characterised by increased and complex support and care needs. It may precede the end stage and involve a more pronounced impact on daily life. The transition from advanced MS to end-stage MS typically occurs when treatments are no longer considered effective, and people may require continuous, 24-hour care.
Symptoms that may indicate someone is nearing end stage MS could be:
Mental confusion: impaired cognition and disorientation
Severe bladder and bowel issues: that lead to urinary tract infections and repeat hospitalisations
End-stage MS can affect the muscles: involved in swallowing, leading to difficulties in eating and drinking. This can lead to aspiration pneumonia (fluid or food entering the lungs) and recurrent respiratory infections
Communication can become challenging: due to weakness in the muscles involved in speech, leading to slurred or difficult-to-understand speech.
Weakened respiratory muscles: can result in breathing difficulties, increasing the risk of respiratory infections.Increased pain spasticity
Severely Impaired mobility: which increases the risks of blood clots and pressure areas Severe fatigue is common and can exacerbate other symptoms, limiting the ability to engage in daily activities.
Many of these symptoms are similar to those seen in someone with advanced MS, so it can be difficult to determine whether you've entered the final stages of MS, also known as end stage of MS. Additionally, the symptoms may occur to varying degrees, and the specific manifestations can differ from person to person.
However, whilst treatment for advanced MS aims to help people improve medically, in end-stage MS, people may no longer respond to treatment, and the focus then shifts to helping people with compassionate care, including palliative care that means people can live their end of life with respect, dignity and as comfortably as possible.
Palliative care is crucial for people in the end stages of MS. Palliative care aims to provide the best quality of life to people with complex, severe health needs, and the focus is on individual needs and experience rather than the condition. Palliative care teams or specialists work together with people and their families to create a care plan specifically for the person's unique wishes and needs.
Palliative care can be accessed at any point in a person's condition where they feel that you need support to manage your symptoms, and most often it is provided at home or in the community. It is not necessary to go to hospital for palliative care, and it’s not just for people with a terminal condition or prognosis.
It is important for people to consider Advance Care Planning and to think about the future and their wishes for healthcare in the case they are too sick or unable to communicate their own decisions. There are many resources available to support advanced care planning.
We have provided a webinar from the Advance Care Planning team at Eastern Health here and a factsheet about planning for future care and end of life.
Voluntary assisted dying (VAD) in Australia refers to a process where an eligible individual (and only that individual) who is at the end of their life, and suffering, may choose the timing and manner of their death, after following steps set out in the law. The assistance provided to a person by a trained VAD health practitioner to end their life includes:
Self-administration: where the person takes the VAD medication themselves (this is sometimes called physician-assisted suicide or dying), and
Practitioner administration: where the person is given the medication by a doctor (or in some Australian States, a nurse practitioner or registered nurse) (this is sometimes called voluntary euthanasia).
‘Voluntary’ indicates that the practice is a voluntary choice of the person, and that they are competent (have capacity) to decide to access VAD.
Voluntary assisted dying has been legalised in all states across Australia. It is not yet legal in the Northern Territory or the Australian Capital Territory.
In states where VAD is legalised, individuals must be:
Australian citizens or permanent residents aged 18 or over,
acting voluntarily,
have decision-making capacity and
have a terminal medical illness likely to cause death within six months, or 12 months in the case of neurodegenerative conditions.
Note: Queensland’s rules differ; the person applying needs to have a condition likely to cause death within a year. The medical condition must also cause suffering that cannot be relieved tolerably.
Generally, people need to make a number of requests for access to VAD and be assessed at least twice by medical professionals. The information and laws related to VAD change frequently and up-to-date information can be found from the Go Gentle website here.
Most people with MS will not go on to have advanced MS or end stage MS. If you have concerns that you have advanced MS, it’s vital to speak with your healthcare professionals such as your neurologist and MS Nurse to discuss your symptoms. If your MS has advanced, there are supports and services to help navigate these symptoms, and focuses on easing symptoms and helping you to maintain a good quality of life. We have allied health support, accommodation and respite, and NDIS services that will enable you to live well with advanced MS.
To find out more about supports and services, or to speak with an MS Nurse Advisor, reach out to Plus Connect on 1800 042 138 or email [email protected]