13 June 2022

Palliative care in intensive care

Parents Chris and Sharon talk about their son, Tommy, passing away in the General Intensive Care Unit in Southampton.

Tommy was 21 when he passed away but was diagnosed with Duchenne Muscular Dystrophy when he was just three years old. This is a progressive genetic condition where muscles weaken and deteriorate over time. There is no cure.

Tommy began to use a wheelchair when he was 10 and lost mobility in his arms during his teens. As the condition progressed he lost all mobility except some movement in his fingertips, neck, and face. Over time, the disease affects organ muscles including the heart and lungs.

Tommy had eight consultants in different areas of the hospital, and we had an agreement that he would come to Southampton, as his primary care hospital, for treatment whenever he needed it.

On Monday 8 November 2021, Tommy came into hospital due to respiratory and heart issues but sadly passed away on the Friday.

Tommy was given his own room and bed space in the Intensive Care Unit. This meant that despite visitor restrictions in the hospital due to Coronavirus, we were both allowed to stay with him.

We also appreciated that his two carers were allowed to visit and continue to help with his care. In his final days, this meant a lot to all of us, not just for the physical support, but also the moral and spiritual support they gave.

During the last night with Tommy, we stayed in recliner chairs by his bed and had additional seats brought in for us. We have worried a lot about Tommy’s awareness in the hospital, and hope he wasn’t aware of his clinical surroundings.

There was nothing personal to him in the room or any artwork on the walls. Monitors and medical equipment surrounded his bedside. It was what he needed for his care, but it was not a comforting space.

Sadly, he was too sick to transport to a local hospice for palliative care, so creating a palliative care suite within the GICU will be so beneficial. This will make a huge difference, giving patients their dignity and a sense of themselves during their last moments.

It will provide family members comfort, peace, and privacy during an extremely difficult time.

The importance of a palliative care suite

General Intensive Care Unit Appeal

Our General Intensive Care Unit treats around 2,500 every year.

All of them have severe, life-threatening conditions ranging from serious infections to injuries from major accidents. And it is where many patients with coronavirus are treated.

A gift to our appeal will help us to kit out the new state-of-the-art unit which is currently being built. Help us to give our sickest patients the world-class care they deserve.

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