Many years ago I nursed a man, Jim (not his real name) who was a widower.
He had a few visitors, a couple who lived next door, an old friend called Pete (not his real name) who came every day and his daughter visited at the weekend.
Jim had a series of complications following an MI and his condition suddenly deteriorated one evening. His daughter was called and over the next few days it became clear that he was going to die.
The day after he collapsed his old friend popped in. Pete was in fact his partner and they had been in a relationship for many years but had kept it a secret from their families for fear of their reaction.
What followed was a very difficult situation. As Jim deteriorated his daughter sat with him and Pete continued to play the role of concerned friend. He told the nurses how they had been part of each others lives for 20 years but at the end he was not able to sit and be with Jim or take any part in his funeral arrangements.
The nursing team found it difficult to balance the need for secrecy with the need for Jim and Pete to spend time together. We did our best but we knew that when Pete left the ward he would grieve on his own.
Last week the National End of Life Care Programme published guidance on care for lesbian, gay, bisexual and transgender people at the end of their lives.
While guidance cannot change societal attitudes it can help healthcare staff understand and respond to the challenges faced by a person has not previously “come out” or those isolated from their families because of their sexuality.
We all make assumptions and judgments about people and their relationships: the family who never visit, the wife who bullies her husband and stays too long, or the person who has no one who cares about them. These guidelines challenge us to examine our attitudes to relationships and what we understand by the term “next of kin”.
Sam Turner, director of public engagement at the National Council for Palliative Care, sums up the consequences of failing to do this. She says: “We only have one chance to get end of life care right for people who are dying”.
For Pete and Jim the fear of being “found out” and of rejection surpassed their wish to spend their last days together and that is profoundly sad. We couldn’t fix their problem but perhaps with guidance we may have had more understanding and the confidence to support Jim and Pete and ultimately make their lives easier.