Friday, February 22, 2013

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 post covering 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

7 comments:

Laura Davis, AAHPM said...

AAHPM has contacted the NPR reporter who wrote the blog post to ask him to clarify and restate the Academy's recommendation: do not delay palliative care for a patient with a serious illness. We explained that by offering palliative care early, alongside aggressive treatment, it can decrease pain, allow less time in the hospital, and recent studies suggest that patients live longer than comparison groups that do not receive early palliative care. Thank you for helping to support this Choosing Wisely recommendation.

Laura Davis
Director, Marketing & Membership
American Academy of Hospice and Palliative Medicine (AAHPM)

Laura Davis, AAHPM said...

I'm pleased to report that NPR has issued a correction to the original post:Correction Feb. 22, 2013:

The original version of this post erroneously stated that doctors should not withhold hospice care from seriously ill patients who are still receiving treatment for their disease. The recommendation was that doctors should not withhold palliative care.

Laura Davis
AAHPM

Alex Smith said...

Thanks Shaida, for bringing the NPR story and error to everyone's attention. And also for putting these differing definitions of palliative care on the same page. At least none of us thinks palliative care and hospice are the same!

And thanks to Laura for helping NPR get it right!

Jim Siegel said...

Shaida – thanks very much for this article and your questions: “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?”

Education and communication about palliative care are a constant focus for my colleagues and me at HealthCare Chaplaincy in New York . That’s because our mission is “to improve the effectiveness and efficiency of health care through the innovative ways chaplains promote and advance palliative care research, education and practice.” We have, in fact, a double challenge, because most people have no clue that there is such a thing as professional, board certified chaplains who are specially trained and credentialed to work in health care settings and to help everyone regardless of religion, beliefs, or culture.

First, to explain palliative care, we feature the World Health Organization definition in our publications:

“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

We add in our messaging:

“Palliative care encompasses the whole person – body, mind, and spirit. It’s appropriate when receiving treatment intended to cure, for when an illness is chronic, or near end of life. Palliative care relieves suffering and matches treatment to what the patient and family choose based on knowing and understanding what those choices are.”

Then, since “spirit” can be an ambiguous term, we say:

“It’s reasonable to assume that when we are coping with illness, trauma, or grief, everyone has a source of spiritual strength which may or not be grounded in religious belief. Professional chaplains are the specialists on the health care team who help people identify and draw upon that spiritual strength to find meaning and comfort while doctors and nurses focus on the body.”

To explain further the value that professional chaplains provide, we say:

“Research shows that professional chaplains working as members of the health care team:

• Improve patient and family satisfaction by helping them address emotional and spiritual needs.

• Facilitate end-of-life care discussions for patients that can influence goals of care, hospice enrollment, and better patient quality of life near death”
In addition, we know that chaplains and other spiritual care providers must become better trained in palliative care. That’s why the California State University Institute of Palliative Medicine and HealthCare Chaplaincy have linked up to create a new online professional certificate course in palliative care for chaplains and other spiritual care providers

I hope this information is useful for GeriPal readers.

Gail Austin Cooney MD said...

I would like to clarify that the Medicare Hospice Benefit only precludes CURATIVE therapy, not disease-directed therapy. This is a common misconception among both hospice and palliative care professionals - so it's no wonder that the public is confused! It is much more common for a patient with serious illness to receive disease-directed therapy that is palliative but not curative.

Many in the hospice industry perpetuate this "myth" because these palliative therapies are often complex and expensive. The hospice program may choose not to cover them but it is not because they are precluded by the Hospice Medicare Benefit.

Thanks for starting the conversation!

David Bynon said...

Thank you for the clarification on palliative care vs. hospice. While hospice may include palliative treatment, palliative care should not infer hospice. The hospice option is a one-way ticket with Medicare and has serious implications.

Shaida Talebreza Brandon said...

Thanks to Laura and AAHPM for the rapid response! It appears that we do have a mechanism for an immediate, widespread, powerful, unified response to topics that misrepresented palliative and end-of-life care!

Thanks everyone for the comments on the topic!