Although palliative care is beneficial at earlier stages PH, it does have an important role to play at the end.
Mark’s wife Fiona received help from a hospice and district nurse team to fulfil her wish to die at home, providing essential support to the family during the most difficult of times. Here, Mark reflects on the role that palliative care played during those final weeks.

“The help we had was immeasurable”

“Fiona was diagnosed with PH in 2008 and had 12 years of superb care under our specialist centre at the Royal Hallamshire Hospital.

In October 2019, we were told we had reached a point where nothing more could be done. Fiona was too ill for a transplant, she would start to deteriorate more quickly, and it was now about managing quality of life.

It was around this time that we started thinking about palliative care and that’s when Fiona decided she wanted to be at home at the end with time to see family members.

In July 2020, we were told there were just a few weeks left for Fiona to live – and that’s when the focused discussions began.

The nurse specialist at our PH centre explained what to expect from palliative care at this stage. It was explained really well to us, and we understood the different care options available.

Fiona was referred to our local hospice in East Lancashire and someone came out to see us. He was also very good.

Hospice staff and district nurses began visiting most days, with the main focus on getting her medication balanced and keeping her comfortable.

The help we received meant I could manage my stress levels and spend quality time with Fiona. The care was supporting me too; it took a lot of pressure off.  Several members of the family who were here to help Fiona and I commented on how wonderful, supportive and caring the district nurses and hospice staff were.

Fiona died in August 2020, at home, where she wanted to be. The help we had during those last few weeks was immeasurable.

It is difficult to accept that palliative care is going to be needed. You fight for so long, and then it feels like you have to accept the end is near – I think that’s partly why it’s easy to switch off from early conversations about it. But we wouldn’t have managed without that care; things would have been very different.”