Keeping up the
n o i t a s r e v n o c 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.
I
believe 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.
AUTUMN 2021 emphasis 50 AUTUMN 2021 emphasis 52
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.
