Of course at university we have been told all about the Activities of Living by Roper, Tierney and Logan. One of them is Expressing Sexuality/Intimacy. This aspect is often overlooked, especially in End of Life care. Many people find sexuality an uncomfortable subject because they focus on the SEXuality. But expressing sexuality also involves intimacy with your partner. Holding, kissing, sleeping together, hugging. All of those things are part of sexuality.
Today I looked after a young man* who is dying of cancer. His hospital bed has been set up in the bedroom next to his double bed where his wife sleeps. Imagine sleeping with your partner in one bed for years and then when you most need to be close, when you are going to lose the person you love, you can not lie with them, hold them and feel them. You can only look at them at night, as they sleep in a cold, noisy hospital bed a couple of feet away from you.
As nurses, we can sometimes be too focused on making the patient comfortable. Once we have achieved this, we are happy. Sometimes though, physical comfort is less important to a patient than emotional comfort. I asked the patient if he would like to be in bed with his wife for a while. In his own bed, with his own wife. The young man said he was too tired for it at the moment but his eyes lit up. He had not realised this was possible. Nor had his wife who had tears in her eyes when I explained it would be perfectly possible to transfer her husband for an hour and then, with our help, transfer him back in to his hospital bed again. To give them the chance of feeling like husband and wife again for a precious hour.
It is easy to forget how important such small things can be to a patient and their family. Yes a hospital bed with an alternating air mattress is of course what the patient needs. But does that mean the patient must stay in that bed 24/7? What is the ultimate aim of enabling people to die in their own home: to feel surrounded by those they love. And what better way to do this than to enable them to have physical intimacy with the person they have chosen to share their life with? Sometimes we have to think a little outside the box.
I had forgotten about that experience until today. And when I saw the look on the patient's face, I remembered how important it was for me back then. And how important it was for them today. In those small, short moments, I think that maybe, just maybe, all that pain and suffering will end up making somebody else's death a little bit better. What a fantastic legacy to leave.
Here is a lovely article on intimacy at the end of life.
* Details have been changed to maintain confidentiality