When I first worked in palliative care, most people that I knew didn’t know what it was, unless I told them that I worked in a hospice. Even then, they only thought it related to terminal care for people with cancer.
The organisation that I worked for wouldn’t even call their hospices ‘hospices’, and instead called them ‘Specialist Palliative Care Centres’. Needless to say, even fewer people really knew what these ‘specialist centres’ did as a result.
Whilst I appreciate why my colleagues wanted to validate palliative care as a proper specialty within medicine, and encourage all kinds of health workers to get involved in it, my conclusion 15 years later is that the term palliative care just doesn’t resonate with the public. In addition to this, even within healthcare, many health professionals only have a limited understanding of what it is, and generally associate it with end of life care, and only when all treatment options have been exhausted.
A disturbing consequence of this confusion is that the pro-assisted suicide lobby are positioning their arguments as a reasonable and compassionate option for people living with life limiting illnesses. What worries me about this is that the palliative care community risks losing its legitimate claim to be the most caring, compassionate and effective way of supporting people with such conditions.
In Raising Awareness of Hospice & Palliative Care, Kate Jackson highlights a recent study that found that palliative care as a concept may be too inextricably linked to imminent death. Furthermore, most people (public and health professionals) generally associate palliative care with cancer.
Research presented by Dr Sonja McIlfatrick at the recent Palliative Care Congress in Harrogate showed that 75% of people didn’t know what palliative care was, although most people had heard the term (How well do the general public understand palliative care? A mixed methods study).
The research went on to suggest that public knowledge, awareness and understanding could be enhanced by better use of the media, overcoming cultural barriers to talking about dying, and making the term ‘palliative care’ more widely known. But I think it needs to be more than that. We need to make sure that our messages are not only received, but that they are understood and acted upon.
At the risk of facing the wrath of my clinical colleagues, I therefore feel that we need to consider whether palliative care needs a rebrand. Communication is so essential to raising awareness, and my concern is that by talking about it in medical specialty terms, we are overcomplicating things.
Whilst I fully endorse the efforts being made by colleagues across the world to advocate for palliative care with health professionals and policy makers, I believe that mobilising the public to demand good and appropriate palliative care is ultimately what will force politicians and policy makers to respond. Much of my job, and that of my colleagues at EMMS International, is to promote the value of palliative care to the public. Frankly, the term ‘palliative care’ is one of the greatest barriers to doing this.
Palliative care is not just about imminent death or cancer. It’s a hugely beneficial form of care and support that is appropriate for almost every person that faces a life limiting illness, and it should be provided as early as possible within their care and treatment. It’s also about empowering the person and their family, ensuring proper pain management and dealing with all of the emotional, physical and psychological challenges that they face as result of their illness.
I therefore think that it’s time that we swallowed our professional pride and invested more time in thinking about the simplest and most effective ways of communicating what palliative care is. I believe that it’s perfectly acceptable to decouple medical terminology from how we communicate what palliative care is, and that by doing so we can raise the profile and value of palliative care globally. Let’s have a debate about how best to engage the public and learn from each other’s successes!
If we are to ensure that palliative care is understood as the best way to for people with life limiting illnesses to remain in control, we need to come up with better ways of describing and communicating what it is. If we don’t, we risk the nightmare of millions of vulnerable people continuing to suffer unnecessarily, and the danger of the assisted suicide lobby winning the empowerment argument.
This article was originally published on James’ own blog (James’ Journal) and is republished here with permission.
For further interesting discussion on this terminology, see the transcript of today’s #hpmglobal Tweetchat.