Dr Chris Chew, a Senior Clinical Fellow in PH and Interstitial Lung Disease and PH, is passionate about helping his patients understand palliative care and the support it can provide. In his own words, this is why it matters…

“In my experience, it’s perfectly normal to get a jolt of anxiety or even fear when your doctors bring up the topic of palliative care or suggest that you should meet your local palliative care team. After all, a lot of people (including some doctors) still think that you only get palliative care if you’re imminently dying and don’t have long left for the world. But that’s not the whole picture anymore – palliative care is actually quite a young specialty, and a lot has changed since it was founded!

In fact, palliative care got its start right here in the UK, when Dame Cicely Saunders founded St. Christopher’s Hospice in London in 1967. Dame Saunders wanted to make sure that dying and terminally ill patients weren’t simply left alone, as they were often neglected by the medical establishment at the time. However, she also advocated for a more wholistic approach to relieving discomfort in all its forms, coining the term “total pain”. This described not just physical symptoms, but also mental distress, social, and spiritual issues too.

Nowadays, as the specialty of palliative care has grown and expanded, there is an increasing focus on relieving symptoms and discomfort rather than just caring for those in their final days. A lot of patients receive palliative care successfully in the community for many years. In fact, some studies even suggest that those receiving palliative care can live longer than those who don’t!

So, how do I usually explain palliative care to my patients? I tell them that getting palliative care professionals involved is about helping us find the right balance in their care, in all the ways that matter most. After all, our palliative care colleagues bring both common sense and specialised experience to the table!

Palliative care isn’t a one-way trip to some sort of strange parallel medical universe. Instead, it works hand-in-hand with your usual medical care – making sure we are getting the balance right, together with you

The first ‘balance’ is making sure we remember that symptoms and discomfort are important in themselves and should be treated. We always do everything we can to cure or stop disease. But even if we can’t yet alter a disease’s natural trajectory, it’s still vital to ease the impact of symptoms.

For example, a lot of really common diseases – such as asthma, diabetes – aren’t actually curable, yet. But we can get a lot of mileage by treating the symptoms, like with inhalers or insulin injections. Similarly, palliative care teams are experts in palliating symptoms like breathlessness, pain or fatigue, even when the underlying disease itself isn’t curable.

The second ‘balance’ is making sure that we have our priorities right between the future and the here-and-now. In medicine, we often ask people to put up with a lot of things that are tough or unpleasant in the here-and-now (like surgery or chemotherapy), in the hopes of better days in the future. But if it becomes clear that time is short or limited, figuring out how to make the most of right here and right now might be more sensible than suffering for an unclear future.

The third ‘balance’ is remembering that psychosocial support is just as important as medical care for quality of life. Many palliative care teams work predominantly in the community and have staff who can come and visit you at home and in the early stages this is now often taken on by a district nurse.

They might also have access to allied health practitioners like social workers or occupational therapists who can help get you the support you need to stay at home, or pastoral care staff able to lend a listening ear when you need it the most.

I think it’s essential to say that palliative care isn’t a one-way trip to some sort of strange parallel medical universe. Instead, it works hand-in-hand with your usual medical care – making sure we are getting the balance right, together with you.

So don’t be afraid to ask your team about palliative care, or to engage in a conversation if they bring it up themselves.”

Our free publication aims to help you understand more about the role of palliative care in PH. With advice from experts and real experiences, this resource is designed to educate, inform, and spark important conversations. It also includes a separate Anticipatory Care Plan booklet, tucked inside the back cover, to help you plan for the future.