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by Suzana Makowski

By now, many of you may have heard or read Charles Ornstein,(@charlesornstein) a Pulitzer Prize-winning senior reporter, on NPR or in ProPublica on "How Mom’s Death Changed My Thinking About End-of-Life Care."  He tells of his mother's final days in the hospital, after having aspirated during the placement of a naso-gastric tube that resulted in cardio-pulmonary arrest and subsequent days in the ICU.  He speaks to the sense of being alone and the lack of guidance in the process of end-of-life decision-making.  My heart dropped when hearing this story - for his (and his family's) loss, the difficulty of the process so clearly expressed, and for the haunting silence and void of palliative care throughout the care and in his stories.

During the interview with Jorge Valencia from The Story, Mr. Ornstein outlined his wish to have had "someone that was not involved in this case at all to come in and offer a perspective."  He did not want his decision to be rushed.  He expresses how his experience changed his view of end-of-life care - heightening his awareness of how the media and politicians have "allowed societal slogans to prevent us from having sophisticated conversations about end-of-life care" and as a result have left families without any sense of support.

Mr. Ornstein reached out to an author of the Dartmouth Atlas (a family physician and researcher), to other experts in neurology, and to literature on the web for guidance and reasurrance, but the story didn't mention working with a palliative medicine clinician.  Perhaps he did not meet with a palliative medicine clinician because of lack of access, or perhaps because of the mis-perception of our field.  Perhaps he, like many others, did not realize in addition to being experts on alleviating pain and suffering, on caring for patients who are living with  long-term life-threatening illnesses like cancer and dementia, we also are experts in helping navigate difficult questions about prognosis, medical decision-making - and especially in situations like these - not merely the questions of "whether to get another round of chemo, or to keep someone alive by putting a feeding tube int heir stomach or a tracheostomy as they're progressing to their death." It is in the grey areas that the specialist is called in, when the decisions are not clear, when the discussion is harder.

There is a lot of discussion amongst the leaders and board members of AAHPM, HPNA, and NHPCO about the need to work with the media to make better known what our role can be, to change our public image.  Indeed, we have our work cut out for us.  We are taking steps to increase understanding of our specialty - we have a patient website, www.palliativedoctors.org, we created a youtube video speaking to situation Mr. Ornstein writes, we tweet ferociously, and even our board's President, Amy Abernathy is planning to speak at this year's TEDMED, but we have a lot more to do.  If the President of the Board of the Association of Health Care Journalists, who has written extensively on the US healthcare system and end-of-life care, is unfamiliar with palliative care as a specialty in medicine, nursing, and social work that could have intervened and offered the unbiased guidance in medical decision-making, as well as helping support patient and family to address the trauma and grief of their experience, then surely others without his professional interest who face similar healthcare situations would not know to turn to us.

I agree with Mr. Ornstein: we need help from our politicians and from CMS leadership to recognize the both the work and value of having the conversation, as well as the expertise it takes when done well to assure families the guidance, support, and non-abandonment they deserve when facing the toughest of decisions - how to care for patients at the end of life, especially when it is unclear how near that end truly is.

I encourage us to take Mr. Ornstein up on his request to expand the dialogue with healthcare reporters about end-of-life care and to answer Mr. Valencia's question on how to "make this conversation more public and less lonely."

Lastly, I can't help but think how different his story might have been had palliative care been part of his mother's and family's care during those days in the ICU.  We may not have changed the outcome or the weight of grief, but I am certain palliative care could have offered another perspective, to listen, to lend strength, and to assure the family would not have felt so alone.

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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...

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The Happy Hospitalist, a long time blogger and purveyor of fine absurdist humor with the creation of multiple 'animated bear' videos (aka Xtranormal videos) has created a video focused on the dying patient in the intensive care unit...but not really.  Not really in the fact the video is not patient-centered at all, and that is the point.  HH skewers the system that so readily places orders for tests, scans and procedures before even talking or touching the patient.  For anyone in hospital based palliative care I am sure there are many witnessed experiences in the self-declared hyperbole of the video.


Here is the video (link to original post):


Below are some of my favorite lines/segments because they emphasize the frustrating weaknesses of our current approach to care of the critically ill:

"His functional score is -2, which means death within minutes."
'The cardiologist who orders a stat echo, EKG Q1 hour, and a iTunes enhanced pacemaker so he can bill for music therapy.'
"'Everyone deserves to die with a normal BMP."

There are other little gems I don't want to spoil that will make sense to anyone who has worked in the hospital, and for the non health care professionals reading this post I think anyone who has had a loved one critically ill will recognize some of these absurd situations that divorce the care of the numbers from the care of the patient.  This point is highlighted in my favorite line of the video which is repeated over and over again from both the hospitalist and the ICU nurse:

Listen all the way to the end to get a sense of what HH really thinks about palliative care in the hospital.  He has been a big supporter of palliative care and he gets the fact that palliative care should be far upstream from just dying patients in the ICU.  For examples see some of his other posts:
Barriers to Palliative and Hospice Care: Denied by the Nursing Home
End of Life Care Discussion Should Occur Before Death
The Power of Love: Going to Dialysis Hell and Back

Leave your thoughts here but also go to Happy Hospitalist's blog and leave comments there because it is pretty popular and our thoughts might get to people outside our normal blogging circles

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I've grumbled umpteen times that Wikipedia ought get a "Hospice and Palliative Medicine" article written. As it stood when HPM, as a subspecialty, was the intended idea, writers would usually cobble together links to the separate "Hospice" and "Palliative Care" articles. Then I suddenly remembered that we are Wikipedia, and such an article wasn't going to write itself. So I clicked the letters in red of an unwritten article, and wrote one.

Since this is a pretty active Web-2.0 community aligned with the "collaborative, publish first, refine on the go" paradigm, I thought I would turn it over to all y'all to grow it from an initial stub into its full-blossomed elaboration.

So sign in and edit as you see fit, and let's see what we come up with. Also go through the various other, related articles and fine tune the links in the web of Wikipedia knowledge.

Enjoy!