Keeping up the conversations

Keeping up the conversation

Over the last few issues of Emphasis, we’ve featured various articles around palliative care and how it can support people to live well with pulmonary hypertension. We believe it’s important to keep these conversations going, to break down barriers and help patients and their families benefit from the care available to them. Here, Sian Richardson, a PH specialist with a long career in palliative care behind her, shares her thoughts on this important subject.

Ibelieve palliative care is for the whole path someone is walking along with PH. As PH specialists we can help to introduce this and answer the questions that so many people - patients and their loved ones - are fearful of asking.

They want these conversations about progression and prognosis, but they want their PH specialist to do it. As PH professionals, we understand the condition. So many of them have had such a battle to even get their diagnosis, so they trust us to help them.

One thing that is different in palliative care in PH, compared to previous roles I’ve had, is the longevity of relationships with our patients. I’m three-and-a-half years into my post and I still see people I met in my first week, and I love that. I get to know the patient, their families, and their journey with PH - and it’s really important to have that history when you are referring someone for palliative care.

Historically, community palliative care would only take cancer patients, but access is so much better now that there is more understanding of other diseases. And as PH specialists, we will liaise directly with the community palliative care team (for example Macmillan nurses, or a hospice) throughout that care. It really works.

The difference that palliative care can make to patients and their families is massive. It’s about supportive care during their journey, and if they need it in the future, it can be part of their palliative care later on too.

Palliative care is holistic, supportive care. When I worked in palliative care, we might see someone for symptom management, and then not see them again for a year. It’s for all stages of the journey.

It could be for symptom management, like breathlessness and fatigue, or for psychological support – which is part of that holistic care.

The bereavement support that can be offered is so important too, especially if there are children involved.

It’s really important that if someone needs palliative care, they feel they are able to access it.

Patients and their families should feel they are able to bring up palliative care with their PH team; whoever they feel the most comfortable talking to. They don’t have to wait until a clinic appointment, they can call at any time – and some may find it easier to talk about it on the phone.

As PH professionals we will always listen to them, and help, when the time is right for them.

We know a lot of people go straight to Google when they get their PH diagnosis. They then get frightened and bury it all. But having those earlier conversations about supportive and palliative care can make such a difference.

There are so many amazing things that palliative care can do; it’s such an asset for the patient and those around them. We need to show people what is available without them being frightened.

Sometimes the families are the biggest ‘fear barrier’. They think if palliative care is discussed with their loved one it means they will think they are dying, so they will lose their hope and stop living. But it’s the absolute opposite.

Palliative care is about supporting someone right from diagnosis. It’s truly holistic care, ‘whole person’ care, and put simply, it’s about asking ‘how are you?’

It’s about supporting the journey, and it’s important to start at the beginning.

Sian Richardson is a Clinical Nurse Specialist (CNS) within the Sheffield Pulmonary Vascular Disease Unit. She has previously spent 14 years as a CNS in palliative care, working across hospitals in Sheffield, and ten years as a nurse within a hospice. New PHA UK publication coming soon To enable more people to understand palliative care and how it can help them, we are working on a special publication dedicated to this subject. We expect it to be published before the end of the year. If you would like to pre-order this publication (completely free) please email office@phauk.org or call 01709 761450 and we will send you a copy as soon as it is printed.