We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF‐related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care...
Conclusions Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death.
Why is there such widespread misperception? Because no one has done an adequate job of defining what palliative care really is. A while back I went on a search for clarity on this subject. After identifying what I thought was the best article available on the topic I realized that even it failed. In a post in which I linked to that article I pondered why no one has defined palliative care and concluded, shockingly, that the true definition of the role of palliative care is an embarrassment to our profession. That's right. As I said in the post (emphasis added):
So lots of helpful information there. But the authors fail in one aspect. They fail to define palliative care. They talk around it but don't define it. As I've become comfortable with the idea of palliative care in recent years I've come to know what it is. Despite that, no one has precisely articulated a definition that I know of.
If palliative care is a specialty as the authors claim, what are the distinctives? Again, we need a definition. A definition has two steps. First it places the thing under discussion in a general category. Then it lists attributes that distinguish that particular thing from other members of the same category. For example, step 1: Palliative care is a medical discipline.. Step 2: characterized by ?????. There's the hard part. What are the distinguishing characteristics of palliative care? The authors list quite a few characteristics. The problem is those characteristics don't distinguish palliative care from other disciplines of medicine: Palliative care focuses on severe illness in patients with multiple and complex problems. It applies expertise to the management of a variety of symptoms. It educates patients and their families on diagnosis, prognosis and the goals of treatment. It coordinates complex care across multiple disciplines and settings.
Do you begin to see the problem here? Palliative care is nothing more than good primary care. Or what an excellent internist or hospitalist should be doing. So yes, there is a definition for palliative care but it goes unspoken because the profession is, or should be, embarrassed by the fact that we need a “specialty” whose focus is to offload the rest of us from doing all those things that make for excellence in comprehensive care because we don't have the time.
There's an emerging data set which informs us that palliative care is very high value care because it saves money while increasing quality of life and maybe even survival. But that's nothing more than saying that time spent with patients, excellence in care and coordination across transitions improves lives and saves money. Palliative care can rightly claim “We specialize in excellence.” What that, the fact that we need a special “service” to deliver excellence, says about the rest of us who are increasingly pushed toward mediocrity by performance metrics and time pressures, goes largely unspoken.