Multiple Sclerosis: friends & family experiences

MS: talking about end of life

Most people who have Multiple Sclerosis (MS) are diagnosed in their 20s and 30s and, like people without MS, most will live for decades. This means that it is not right to think of MS as a terminal condition in the same way that – for example – certain aggressive cancers are considered terminal. But MS can cause serious disability over time and some of the symptoms associated with severe MS can be life threatening. Care and support can help minimise the risks of death from severe symptoms.

Progressive MS (primary and secondary) is often associated with more severe symptoms. Increasing immobility raises the risk of chest and urinary tract infections. Infections can be serious and some can be fatal*. But there are people with primary progressive MS who live a long and fulfilling life. Equally, there are a very small number of people who experience aggressive and severe relapsing remitting MS.

Living with the uncertainty of advanced or aggressive MS can be hard. People may feel torn between wanting to get on with everyday life, not thinking too far ahead, and preparing themselves for what might happen.
Kay is her brother’s only sibling, and both their parents died a few years ago, so she does think about the practicalities of what to do when her brother dies:
Alice doesn’t talk about dying to her friend, though all the professionals involved in his care regard him as being what she calls ‘end-stage.’ But she has tried in various ways to prepare him, and herself, for his death. She organised a party for him a couple of years ago, a big celebration which she talks about as a ‘living funeral’ which she says was ‘therapeutic for everybody.’ She sometimes tells him (he can’t talk now, but she thinks he can still hear her) that if he ‘is exhausted, don’t be strong just for me’.

Sometimes the expectation or the experience of profound disability leads people to thinking about ending their life. Some people talked about the option of assisted dying at the Dignitas clinic in Switzerland. John S thought his wife would be more likely to go into a hospice if ‘her situation gets worse,’ than want to end her own life. Alice said her friend had a ‘short-lived phase’ of wanting to end his life. Ian and his wife had talked, even before she had MS, about considering this in a future where either of them might be incapacitated. Kay thinks she ‘would have wanted to go to that clinic in Switzerland a long time ago, because I don’t think I would want to be like that,’ (disabled as much as her brother).
Other people talked about whether the person with MS might want to commit suicide independently, and one carer talked about his own suicidal thoughts and feelings.
*We are grateful to the MS Society for permission to use extracts from an internal document on ‘end of life terminology’ in writing this section.

(Also see ‘MS: dealing with emotions’ and ‘MS: feelings of loss, grief and bereavement’).

Last reviewed July 2018.

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