Want to keep learning?

This content is taken from the Lancaster University's online course, Palliative Care: Making it Work. Join the course to learn more.

Skip to 0 minutes and 9 seconds We know that many people get help from family and friends when they’re living with progressive illness. But what about people who do not have that support? There were some interesting findings from the InSup-C project in relation to people who live alone in the last year or so of life. For example, across the five participating countries, we found that around a third, or 30%, lived alone but with minimal support from a nearby family member. Aside from Belgium, which had the smallest overall sample, this figure remained constant here in the UK, in Hungary, Germany, and the Netherlands, which is interesting in itself.

Skip to 0 minutes and 47 seconds The average age of this group was 73, with a range from 59 to 93, so a relatively elderly group with slightly more women than men. When we analysed the interviews that we carried out with this living alone group, perhaps not surprisingly, we found that the main problems they mentioned were loneliness and increasing social isolation as they became progressively ill. A few specifically mentioned that they were scared or fearful. For example, a woman in the UK living with chronic heart failure said, “…I wake up in the night and I’m scared stiff and then, when I wake up, I can’t breathe properly… because I feel poorly and I know there’s nobody there to help me…” But the experience was not all negative.

Skip to 1 minute and 28 seconds One Belgian man talked about getting extra help from neighbours who help with his shopping, collecting his medication from the local pharmacy. And services provided in the local community can help reduce social isolation. A person with advanced cancer from Germany said, “I’m sitting here alone the whole day… When the volunteers are visiting me, I’ve got someone to talk to, and that’s a good feeling.” And others were well supported by the response of professionals in their care network. A woman from the Netherlands talked about the home care services that she receives, keeping an eye on her and prompting her to see the doctor if they detected any change or had any concerns about her health or well being.

Skip to 2 minutes and 12 seconds A typical worry for people was not wanting to be a burden on others. One Hungarian participant in the research said, “…being dependent on others makes me terribly sad. When I think about it I could cry. I wish I could just disappear because I don’t want to be a burden on anyone…” It was clear from our evidence, that this sense of fear and of being a burden led some to make a decision to move from home into some sort of residential care, perhaps earlier than they would have done if they had family support. For others, they valued the autonomy that staying at home gave them and were in no hurry to give it up.

Skip to 2 minutes and 50 seconds As professionals, I believe we need to ensure that all our services are flexible and adaptable to ensure maximum choice and a secure support network, particularly for those living alone towards the end of life.

Living alone

Many people get help from family and friends when they are living with a progressive illness. But what about people who do not have that support?

In the following film, Sean Hughes focuses on findings from the InSuP-C project which relate to people living alone in the last year of life.

As you watch the film, you may wish to make notes about any key issues which are discussed. Your notes will be useful in the following activity.

Share this video:

This video is from the free online course:

Palliative Care: Making it Work

Lancaster University