Older people lack support from their communities towards the end of their lives, with many becoming progressively more socially isolated before their death. Both older people and their families and whānau require support which is tailored to match the diversity of our ageing population.

People living in Aged Residential Care facilities are particularly at risk of being isolated from their communities, University of Auckland research by the School of Nursing has found. The results of the study, What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers, has recently been published in Palliative Medicine.

Lead author Professor Merryn Gott says the demand for end of life care is only going to increase, so it is important to explore the role community play, especially as we approach the festive New Year season.

“It is not health professionals, but rather family and friends, who provide the majority of care when someone is approaching the end of their lives. The support they require may be best found within ‘compassionate communities’ where we all have a role to play in supporting them.

“Our study shows there’s a need to build social networks around people who are dying and their family carers. It also indicates that such strategies must be flexible. Many people in advanced age want to develop reciprocal relationships with their community. Like most of us, they want to give of their time and talents. They have so much to offer.”

The research, a three-year study titled Te Pakeketanga: Living and Dying in Advanced Age, was based around in-depth interviews with Māori and non-Māori. It was funded by the Health Research Council of New Zealand and conducted by the Te Arai: Palliative Care and End of Life Research Group, which Professor Gott leads.

Following the interviews, the researchers found it varied how much the older people had been involved in their communities of place, interest and identity throughout their long lives. Some had been central figures who occupied leadership roles for different political, social and cultural groups. Others were described as ‘not sociable’ and their social networks did not appear to extend beyond their immediate family or whānau.

All the older people described in the study had smaller social networks at the end-of-life period.

“This was most poignantly described in accounts of funeral attendance,” Professor Gott says. “Friends and peers had already died, so not many were left to mark their passing. As a result, some older people decided not to bother with having a funeral.” 

Dr Tess Moeke-Maxwell, (Ngāi Tai, Ngāti Pōrou) lead field researcher for the project, added that older Māori who had maintained their tribal connections were more likely to have been given a tangihanga (customary funeral) by their whānau and iwi.