One of the most basic principles of a successful social movement is the use of language and messaging that signals consistency, reliability, and clarity. Think about how our field uses language to describe care for people with serious illness: some call it palliative care or palliative medicine, others supportive care, advanced illness management, care for high need high cost people, complex care management, “end of life” care, hospice.
The language we choose means something specific and important to us, but imagine if you were the CEO of a hospital or health system. The huge variability in terminology for what are essentially the same approaches to care of a vulnerable medically ill population is confusing and therefore drives away the audiences we urgently need to engage. This suggests that, as a field, we have not come to agreement on who we are and what we do.
One way of thinking about what some call “language wars” in palliative care is to think about our brand. A strong brand means that we have a clear and consistent image in the minds of our “customers.” This is what makes it easy to find us, describe us, and is what distinguishes us from, for example, an anesthesia pain service.
The brand identifies us as distinct from other services and represents the value we bring. Market research repeatedly demonstrates that end-of-life language, despite our best intentions, effectively drives away those most in need of our services − especially the large number of Americans with multiple chronic conditions and functional decline who have years to live..
Similarly, younger people with serious illnesses like cancer hope first for cure, and if not for cure, to live with the best possible level of function and quality of life. Thus the import of conveying palliative care as care of serious illness – not as care of terminal illness, end-of-life care or “advanced” care, a term that also signals end of life in public opinion research.
We know from research that defining palliative care in terms of what it is not is a mistake, as it merely continues to link palliative care to those terms. In the eyes of everyone who does not work in this field, this “proximity of words” confuses and does not clarify. The language we use to talk about palliative care must, in positive terms, reposition it as a service with expertise in improving quality of life and function for people of any age and at any stage of a serious medical illness.
Despite enormous growth of the palliative care field, the image of palliative care as end-of-life care persists. This has had a confusing and inhibiting effect on both our role and our brand.
CAPC is often asked what we can do to change the image − the brand − of palliative care. The task is challenging, but the most important strategy is broad message and language discipline, using consistent words and concepts about palliative care’s beneficial impact on quality of life and ability to function for anyone living with a serious illness. We can do this only by avoiding confusing language that conveys mixed messages. If we aren’t clear about our purpose and why we exist as a field, how can our referral sources and the public know what to ask for when facing a serious illness? It will take all of us to shift perceptions and change an ingrained, but incorrect, narrative.
Market research tells us the public wants an added layer of support and care during serious illness that supports their quality of life and function while they are receiving all other appropriate disease treatments. The moment we convey that who we are really talking about is people near the end of life − through language such as terminal illness, end-of-life care, or advanced care − that is the moment when we lose the people who most need us, as well as their families and clinicians.
Use the following definition, tested with and strongly endorsed by more than 90% of 900 likely voters as something they would want for themselves or their family members:
- Palliative care is specialized medical care for people with serious illnesses.
- This type of care is focused on providing patients with relief from the
symptoms, pain, and stress of a serious illness.
- The goal is to improve quality of life for both the patient and the family.
- Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support.
- Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
For physicians, the benefit of palliative care is also as a support system. In physicians’ own words, they told the researchers what is important for us to convey:
- The palliative care team supports frontline physicians by devoting time to intensive family meetings and patient and family counseling.
- It supports treating physicians by resolving questions and conflicts between families/patients and physicians on achievable goals for care.
- It supports treating physicians by providing expertise in pain and symptom management.
No one owns the name palliative care or palliative medicine. It is impossible for us to change the field’s name. Palliative care is the term used internationally for the specialty, and it has been further formalized as a medical and nursing subspecialty, with board certifying examinations, text books, journals, research calls for proposals, and service lines in more than 1,800 US hospitals, all using the name palliative care. Instead, as a field we need to stay on a unified, positive, crystal-clear message about palliative care, explaining in language tested and meaningful to patients and their families what we are and what we do to the audiences we need to engage.
We see progress today at trying to stay on message as a field. However, like all skills, staying on message takes practice, focus, and effort. Remember, oncology, neurology, nephrology, and other subspecialties don’t define themselves or even imply that they exist to treat people nearing the end of life − even though much of the time that’s exactly what they are doing. Neither should the field of palliative care.
Diane E. Meier, MD and Lisa Morgan will speak on the subject of messaging palliative care at the upcoming AAHPM meeting on February 24, 2017.
Post written by Diane E. Meier, MD, Director of the Center to Advance Palliative Care and Lisa Morgan, Principal of LDM Strategies.