As a society we have become much more aware of, or at least willing to talk about, the issue of isolation and loneliness. For far too long we have avoided the subject and it has become a major public health issue.
Isolation and loneliness can be at its worst for someone diagnosed and living with a terminal illness, particularly when approaching the end of their life.
As a person’s physical health declines they can face challenges to their identity and sense of self. They are perhaps forced to give up work, volunteering roles, sports and recreational hobbies. The way they see themselves and how others see them can change too. This can mean people withdrawing from friends and family groups and vice versa.
Those living on their own are at even greater risk of becoming isolated and lonely. As our population ages, grows and changes, more and more people will be living on their own.
Some people, however, prefer to live alone. That doesn’t mean though that they don’t necessarily experience feelings of isolation and loneliness. You can still feel alone in a room full of people.
It can go far beyond just being alone or physically isolated from other people. Facing a terminal diagnosis can mean people struggle to find meaning in their life.
There are some really big issues to come to terms with and try to make sense of; ‘Why am I here?’ ‘What will happen to me after I die?’. That is true for everyone involved including people, families and those trying to provide care.
There can often be a religious element to this for people with faith, but even for those without, there are often existential questions and spiritual matters that can intensify feelings of loneliness and isolation.
Unfortunately, it can be very difficult for anyone, and not just those providing health and social care services, to address and support these needs.
For those living with a terminal illness (and their families) they can and should be receiving palliative care. This type of care is proven to both relieve a person’s physical and pain symptoms, and their emotional and spiritual distress. Evidence shows us that people who get spiritual support have a better quality of life, but many are left without this support.
We know that a quarter of the people who die each year in Scotland do not get all of the care and support they need. For lonely and isolated people it is often relationships with others that can make the difference.
This need can perhaps be met by family and close friends. But often, both patients and family members can struggle to share their fears and thoughts with each other. For those who live alone and do not have any close family or friends it can be almost impossible.
Many wish to spend time with a care professional who can listen to their concerns and talk to them. However, this can be especially challenging where there aren’t enough resources to provide regular health and social care visits, or where they are extremely time limited.
Palliative care specialists may have had training and support to help people with spiritual and emotional needs, but the vast majority of other health and social care staff do not.
Many struggle to support people and families with existential questions or to help them with issues resulting from loss of independence. Some can even struggle to make connections with their patients, leaving their personalities at the door.
Even for palliative care services the focus is sometimes too much on the relief of pain and physical discomfort. We know that many people access palliative care services very late in their terminal illness, sometimes in just the last days and hours of life. This can leave little or no time to address the holistic needs of the individual. This is one of the reasons why palliative care needs to be accessed from the point of a terminal diagnosis to ensure there is enough time for such support.
Our response to this problem cannot simply be a call for another government strategy or similar. We need much more. Not only do we need to support staff and volunteers working with those who are terminally ill, but we also need to support people and families to have more open conversations about death and dying. We need a public response. We need to build more compassionate communities where we all take an interest in our neighbours, reaching out with support, empathy and compassion.
Richard Meade, head of policy and public affairs Scotland, Marie Curie.