Opportunities to Educate the Public, National Public Radio (NPR), and Even Ourselves about Hospice and Palliative Care

I was completely thrilled this morning to see that NPR had a blog postcovering the Choosing Wisely initiative.

The NPR blog explains how the American Board of Internal Medicine partnered with other organizations such as the American Academy of Hospice and Palliative Medicine (AAHPM) and the American Geriatrics Society (AGS) to warn against tests, procedures and treatments “that often do patients no good.”

As I read through the NPR blog I was even more excited to see that many of the recommendations highlighted were regarding Geriatric and Hospice and Palliative Medicine.

Later this afternoon I started thinking about one of the recommendations that NPR listed:

Don’t hold back on providing hospice care to relieve pain and distress just because a seriously ill patient is getting treatment aimed at alleviating disease

I thought this statement was a little confusing. The Medicare Hospice Benefit does not currently allow patients on hospice to seek curative treatment for their terminal illness. So I checked it with the AAHPM Choosing Wisely recommendation:

Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment

I sent an email to AAHPM to let them know there may be an opportunity to contact NPR about the error and to further educate the public about Hospice and Palliative Care. Although this is a common misunderstanding that does not necessary require major action, I started to imagine what would happen if our community had a national hotline that we could contact anytime Hospice and Palliative Care were misrepresented in the media. I remember talking to an administrator of a national health care agency who described how their company had public relations people reading articles and monitoring twitter feeds to quickly correct misinformation about their company before it spread. Imagine if our community of hospice and palliative care providers had a mechanism for an immediate, widespread, powerful, unified response to topics that misrepresented palliative and end-of-life care (such as the whole “Death Panel” ridiculousness).

As Hospice and Palliative professionals we are aware that many people are unfamiliar or confused about our work. Although we do not yet have a national hotline to help us immediately respond to errors in a widespread fashion, we can work together to make sure statements about what we do are powerful and unified.

When reading through the GeriPal post “What’s in a Name: The Branding Issues of Geriatrics and Palliative Care” I found myself nodding my head to the comments:

…when I ask people if they are familiar with the term palliative care, the answer is either “no” or solely about end-of-life

And:

I think it would be much more interesting (& telling) to hear how palliative providers “define” palliative care.

As an Assistant Professor at the University of Utah, I spend a lot of time educating residents about what I do as a Hospice Medical Director and a Home-Based Palliative Care Provider. Here are some of my favorite phrases I have found to describe our field:

Palliative Care (from Primer of Palliative Care):

Patients with advanced disease need and deserve excellent symptom management; capable psychosocial support; assistance with difficult decision making; and warm, healing relationships with professional caregivers. Palliative care is a field developed to help meet these needs for patients and their families. Palliative care is potentially appropriate for patients at all stages of serious illness.

Palliative Care (from CAPC)

Palliative care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. 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 together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Palliative Care (from GeriPal What’s in a name? How do you explain “palliative care”?)

“We’re the palliative care team, think of us as Pal’s for people with serious illness.”

Hospice (from the AAHPM patient website):

There is a specific type of palliative care – called hospice – for people for whom a cure is no longer possible… Hospice care is about giving you control, dignity and comfort so you have the best possible quality of life during the time you have. Hospice care also provides support and grief therapy for your loved ones. Hospice care can be provided at your home, at a hospice facility, a hospital or a nursing home.

How do you describe what we do as hospice and palliative professionals? Do you feel we have a powerful, unified vision or mission statement for our field? How can we educate even more people about what we do?

by: Shaida Talebreza Brandon