Wednesday, June 29, 2011

Increasing Palliative Care Awareness - the 2011 CAPC Public Opinion Research

Palliative Care still befuddles many people when they first hear the term.  Even after seeing it people may feel like the many blind scientists touching different parts of an elephant.  Historically we have described to people what palliative care is on our terms as the experts who provide it.  Looking at many organizations definition of palliative care they have not been made based on public opinion and understanding.

The Center to Advance Palliative Care (CAPC) with support from the American Cancer Society Action Network commissioned a study of public opinions on palliative care, but now the question is what can we do with this new information.

Before I get any further on my opinion of the key findings, I need to tell you to take 15 minutes and read the actual report.  Then go talk to your team and your leadership about this.  It needs to be discussed and understood widely by all stakeholders. Do it, I mean it (and then come back here abnd post what you talked about so we can all learn).

The key findings:

Concerns for quality of care for patients with serious illness, which include:

  • treatment choices not offered
  • lack of physician collaboration
  • lack of confidence in plan after leaving the clinic or hospital
  • lack of control
  • lack of time
  • lack of listening
Perfect!  These are all the things palliative care is good at changing.  Could we be a model for other ways to deliver health care effectively?  Take the time and listen to patients, give them a chance at real informed consent of all options after talking to other physicians and effectively communicate the plan to patients. That is what palliative care does!  You can see where this is headed...

People do not know what palliative care is.  78 % of people said they were 'not at all knowledgeable or don't know' when asked about palliative care. Frustrating I am sure to those of you who beat the drum everyday but at least it is not being wholly defined and understood without us (yet).

Physicians equate palliative care with hospice or end of life care.
Well think about it...many in the field nearly always refer to hospice AND palliative medicine, (although I think this is changing a bit and read to the end for more) so isn't that like peanut butter and jelly?  They have to go together right? (H/T @aliciabloom)

Think about palliative care consults in the hospital which is where most docs are exposed to palliative care.  What does a palliative care team get asked to do?  Consults for goals of care discussion when other options have been exhausted, even though palliative care wants and could be involved much further upstream and some institutions are successful at doing this.  So of course many docs would consider palliative care 'brink of death' care.  Which leads people to think 'hospice in the hospital' which I have heard whilst cringing too many times...

'Serious Illness' is perceived as less about 'being terminal' than 'Advanced Illness' (18% v 36%)
So who is your palliative care team looking to serve...those with serious or advanced illness.  Whichever it is, I think we need to have consistency across the board.  Our two major representative organizations are on the same page at least.  (HPNA did not mention patients, but focused more on support of nurses  in their mission statement)
AAHPM's Core Purpose:
To improve the care of patients with life- threatening or serious conditions through advancement of hospice and palliative medicine.

NHPCO's Vision:
A world where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer.
Are all of our member organizations and constituents using similar language?  Is uniformity a important goal?  I think so.


Palliative Care should be made available to patients with serious illness.
Once informed there were high rates (in the 90's) believing there should be access to pallaitive care for their loved ones, regardless of political affiliation (although there were some differences).  To get patients access to quality palliative care, we need to be able to create a consumer demand especially if physicians are reluctant to consult.  After we do that we need to quickly figure out the workforce issues. (Another blog post...)

Language Matters.
Now for the tricky part that really started me thinking about the conjoined twin nature of Hospice and Palliative Care.  They took what was termed an 'old' definition (source unclear - must ask @DianeEMeier) and compared it to a new version (also source unclear). Italics highlight the new portions:

OLD: Palliative care is the medical specialty focused on improving the quality of life of people facing serious illness. Emphasis is placed on pain and symptom management, communication and coordinated care. Palliative care is appropriate from the time of diagnosis and can be provided along with curative treatment

NEW: 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 - 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 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

Nothing totally revolutionary in the definitions except for the outcomes when they compared the acceptance/favorable rate for the two definition.  Mean Rating Score (Scale of 100) improved from 63 to 74 and the % scoring it in the 75-100 range increased from 36% to 60%.

Personally I think the 'new' one is too long for saying in a clinical setting compared to the first, but maybe better for brochure language.  Also to get people who refer to palliative care to introduce you to the family using the second definition will be pretty hard.  Instead they are likely looking for something easy to say and memorable...like 'hospice in the hospital.' (which is not accurate for those of you with that misconception.)

But the part that got me thinking is this new definition really made me look at the 'can be provided with curative treatment' phrase.  I have said it a million times, but now looking at it makes me think that hospice is becoming less of a type of palliative care since it has the emphasis on time via prognostic qualifications per the Medicare Hospice Benefit.  I know the lumping or splitting the terms of hospice and palliative care is a topic of great debate in the field, so I want to let you know that these are my opinions and not those of the AAHPM board.  But I really think we need to keep this as a open debate for our field.  I don't think we are served by splitting the terms, but lumping is causing confusion. 

So how will you use this research?

And a big kudos to the American Cancer Society Action Network for supporting this.  The ACS is really working well with our key leadership orgs. Now if we could only get the NIH, NCI, and others to...