Terminal illness can be an extremely lonely and isolating experience – it can be incredibly restrictive physically, psychologically, socially, and spiritually, not just for people dying, but also their families and carers. There are a range of physical and mental health issues resulting from terminal illness that can impact on their lives and increase their risk of isolation and loneliness.
There needs to be work to recognise the impact on a person’s mental and physical wellbeing following a terminal diagnosis to ensure that they do not become lonely and socially isolated. But also on the other side, there needs to be work to ensure that people who are lonely and socially isolated get the support and access to services that they need.
Being diagnosed with a terminal illness is a very distressing time and everyone will react differently. They might not understand their diagnosis, they might not know what that means for their life and they might not know how long they have left to live. Some people will be angry, others will be numb or scared. Some will rely heavily on their friends and families for support, if they have them, but others will be surrounded by people and withdraw completely.
We all know that support is important when someone has a terminal illness or at the end of life. However, not everyone gets the support they need. This can lead to greater risk of physical and social isolation when they are at their most vulnerable.
Access to care depends on who you are, what condition you have, your life experiences and where you live – the elderly, those with conditions other than cancer, black Asian and minority ethnic groups, LGBT communities and those from deprived backgrounds are often those most isolated from accessing care. Our research also shows that having a live-in carer is the single most important factor in enabling a person to be cared for at home. If someone is single or lives alone, they might not get the same access to care and support. Similarly, if someone lives in a remote and rural setting they may not have the same access to care and support services at the end of life than those living in urban areas.
However, simply being able to access care and support may not address issues of social isolation and loneliness. People living with a terminal illness will often have complex symptoms and these can often have a direct impact on people’s mental health. For example, People with MND may experience social isolation due to their complex care needs. They may experience swallowing difficulties, require diet texture modifications which can cause social embarrassment in restaurants. They may experience speech changes which can cause issues with self-image and self-esteem.
Someone’s psychosocial, existential and spiritual dimensions may also begin to deteriorate before their physical health declines. People usually face some type of loss at the end of life, whether that is their self-image, their sense of control, their relationships or their independence. Often this can mean that they are isolated from the things they love the most, including their hobbies, interests, friends and what ultimately makes them feel like themselves. This is particularly relevant if someone has to change their living accommodation to allow for care.
This can all lead to and worsen social isolation, loneliness and depression. This coupled with realisation and acceptance of a terminal diagnosis, can significantly impact mental health. This becomes considerably more complex too in the current societal climate, where there are societal difficulties around talking about death, dying and loss.
Caring for a loved one with a terminal illness can also be both physically and emotionally challenging. Research has shown that carers and family members are at increased risk for depression, social isolation and loneliness as their caring responsibilities increase, and as they struggle to cope with the decline and death of a loved one.
Collectively, we need to make sure that terminally ill people, their carers and families are supported throughout someone’s condition and post-bereavement. This might be through a practical focus on appropriate transport, out-of-hours services and specialist services for physically isolated people. More widely though it might be through public health approaches to help educate and support the public about issues related to terminal illness. It can also be through services such as the Marie Curie Helper Service which provides one-to-one emotional support, companionship and information from trained volunteers. Marie Curie also has an online community which can offer vital peer support with people who are in similar situations, or through the professional online and telephone support line, all of which can be accessed here.
Susan Lowes is the Policy and Public Affairs Manager for Marie Curie in Scotland.