Advanced MS

Multiple sclerosis (MS) is a complex neurological disease that affects the brain and spinal cord. A diagnosis of MS does not mean a shorter life. Most people with MS have a normal or near-normal life expectancy with good management and support.

Advanced MS is not a separate type of MS, but a stage in the progression of MS symptoms. It often develops slowly, many years after diagnosis, when someone experiences multiple symptoms at once and requires daily support with activities or care.

You can have advanced MS with any MS type: relapsing-remitting (RRMS), secondary progressive (SPMS), or primary progressive (PPMS). Progressive MS describes the pattern of gradual worsening, while advanced MS describes the extent of disability and support needs.

Signs and symptoms of advanced MS

People with advanced MS may experience a combination of:

• Weakness which may impact standing, grip, or eating and drinking without assistance

• Severe pain

• Spasms and spasticity which impact walking

• Impaired balance and mobility problems, resulting in the inability to walk without using a wheelchair or mobility aid

• Bladder and bowel problems that require supports such as permanent catheterisation

• Tremor and lack of coordination

These symptoms can overlap with earlier MS stages but become more persistent and disabling in 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.

What are the signs of the final stages of MS?

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.

• Affected 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 challenges: due to weakness in the muscles involved in speech, leading to slurred or difficult-to-understand speech.

• Weakened respiratory muscles: resulting 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: this 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 this is advanced or end-stage MS. The symptoms may also occur to varying degrees and can differ from person to person.

While 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, to live their end of life with respect, dignity and in comfort.

What is voluntary assisted dying (VAD) in Australia?

Voluntary assisted dying (VAD) refers to a process where an eligible individual (and only that individual) at the end of their life, who is 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.

• 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.

VAD is legal in all states across Australia, but 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 websiteopens in new tab.