Got Palliative Care?

I was at a meeting of champions for palliative care the other day, which included a brainstorming session of priorities for the future.  The usual culprits were rounded up - changing reimbursement structures, addressing concerns about quality of care, working on improving continuity of care, and education, among others.  One suggestion caught my attention – the need to deliver one message in one voice.  My first thought was that the timing for this was premature.  Significant differences of opinion exist on a host of issues and these differences need to be respected.  “One voice, one message,” runs the risk of shutting out needed debate and suppressing dissent; it is not always a good thing to ‘stay on message.’  But it also occurred to me that perhaps what was needed here was not so much the final product, “one message” but a process in which needed dialogue would occur.

Still, as an exercise, I thought it would be interesting to consider what that message might be.  A commercial I saw on TV (over and over) came to mind, “Got Milk?”

Got Palliative Care? 

If you haven’t seen this string of ads, they go something like this. Wikipedia on Got Milk A guy is eating some cookies, when he realizes he needs something to wash them done.  He opens the refrigerator, grabs a carton of milk, only to find the carton is empty and he is stuck with a mouth full of cookies he can’t swallow. At the end of the ad, the words, “Got Milk” appear.  I know, my telling of it isn’t funny, but just for fun let us consider this as a metaphor for palliative care.  Perhaps there is something we can learn from this award-winning ad that apparently revived milk sales. 

The ads seem to invoke some key notions about the product, milk, which would apply equally well to palliative care:

• The product is a staple and should be widely available.
• The product should be there, when you need it.  All you have to should have to do is ask for it or open the door.
• This is important, because you cannot always predict exactly when you will need it.
• The product is basically good for you – in addition to helping meet your needs.
• The product is highly affordable.
• You already knew all this, but perhaps you just needed a little reminder. 

It is not hard to see how far we are from this ideal state in terms of palliative care:

• Most people (lay public and clinicians) do not know what palliative care is or at least have serious misunderstandings about it.  Concerns still exist that: provision of palliative care may be harmful to your health, that life-saving technologies will be denied, that people will give up hope, that what we are really trying to do is to hustle people along to hospice, where they will just end up getting hooked on morphine.  These and other stereotypes are all too common.  We need to dispel these myths.  We are all for hope!  We are about honoring people’s preferences, not hustling them anywhere. We value life; people live better and often longer if they are properly palliated.  Bottom line: We need to demonstrate that palliative care is good for you!
• Most healthcare managers do not view palliative care as a “must have” service. While you can reasonably expect to go to any hospital or clinic and find something like Cardiology (a staple), it would be a pleasant surprise to find Palliative Care.  So, as of 2006 palliative care is not likely to be available, when you need it. 
• Even where attitudes toward palliative care are improving, many healthcare organizations seem to have the perverse idea that most anything that is good must be a luxury they cannot afford to provide.  Thus, palliative care, where available, is dolled out in small spoonfuls like some expensive caviar.  In promoting palliative care we are not talking about caviar or putting a Jacuzzi in every hospital room, we are talking about something for which there is substantial evidence that the care provided both saves money and results in superior clinical outcomes.  But right now, most healthcare managers just don’t believe it.  We need to challenge this disbelief. 
• While people may be fuzzy on what palliative care is, they have a very clear sense of what they expect from the healthcare system.  It is rather old-fashioned.  They expect a competent and caring response.  They expect reasonable and timely access to care.  Most everybody would like to live longer and have curable things cured, but they are also are of the limits of mortality.  They are acutely aware that illness is unpleasant at best and can be torture at the worst.  They fear this and expect us to attend to their suffering and promote their quality of life at any stage of illness. While people may expect this, they are rightly concerned that such care is too often not available.   They don’t know it, but what I think a lot of people want is palliative care. 

So, milk producers wanted to see more people buying milk.  Apparently they did.  What would I like to see?

• I would love to walk into a patient’s room, identify that I am with the palliative care service and be greet with, “I’ve been waiting for you,” rather than what I usually get – “what is palliative care?”
• I would love to see patients, families, and clinicians ask for palliative care by name, because they did not want to loose hope…
• I would love for patients to comparative shop on health plans and healthcare regarding the availability of palliative care.  If competent, respected palliative care services were not available, they would take their business elsewhere. 
• In turn, hospitals, clinics, and nursing homes would actively promote the availability and quality of palliative care of course because it’s the right thing to do, but also because it gives them a competitive edge and is accepted as a good business practice. 
• I would love for palliative care to be just like milk – nurturing, but nothing special - something you would expect as a matter of course when you open the door.

We’re a long way from this ideal.  But perhaps we can think about some steps we might take along the way.

Comments

[Marian Grant]

I am a former marketing executive who's now a Nurse Practitioner for an in-patient palliative care consult service. My dream is to develop a consistent message we can use with the public to start getting people to request our services. I'd be happy to discuss further with whoever else is interested!

[Sharon Weaver, RN]

Dr Hallenbeck,
I echo your sentiments exactly. How wonderful it would be to see pts come into hospice with pain and other unpleasant symptoms having been relieved throughout their treatment. Too often, they seek hospice care in desperation for relief.

[Sandra Crofton, RN]

I have read your article, and do not understand why the Act of Congress to put through pain management for people. This is already included in Hospice regulations. Why did they rewrite all this new legislation when educational incentives could have just been added to the Hospice existing bills? I guess, in a round about way, I am asking what is the differences between Hospice and Palliative care. And the answer is NOT that Palliative Care provides curative treatment, as one person told me. This is only to be done when it is to relieve pain, and we already do this within the boundaries of Hospice. Also, narcs/controlled substances are used in large doses for pain, so this is not new. I agree, there are doctors who at times limit the amounts of pain RX to patients, when they could benefit from more, but then this falls again into education that would be as much pertinent under Hospice as it is a new classification called Palliative care. HELP?????

[John McPhail]

I think the reason it may seem at times as an "act of congress" to offer palliative care as a staple treatment for the terminally ill, lies with our culture mindset. The United State's Culture doesn't know how to die and so anything but curative measures is seen as giving up. We are not a "give up" culture. But, as Dr. Hallenbeck points out, is the fact that most people (unknowingly perhaps) want palliative care as they become aware of the changes within their own body. Its odd to me that the person with a life limiting illness is thrown out into a fast moving stream and expected to swim, while others dictate their choices for care. The terminally ill feel "shame" or "guilt" for making their real feelings known, after all - nobody is asking them for their input, and nobody seems "brave enough" to ask the terminally ill how they want to live.

Chaplain
John

[tcousounis]

"We’re a long way from this ideal." Indeed, we are, as palliative medicine in this country ermains at best two parts accomplishment for three parts potential. So long as the so-called "culture war" rages on in the US, and permeates the debate about how to reform the US health care system, end-of-life care, and by extension palliative care, will be relegated to vituperative pronouncements by ideologues quick to weigh in with their own beliefs about what constitutes "appropriate" end-of-life care. The Schiavo case was high-profile to be sure, but unfortunately, not an isolated one.
Why should we expect the public to understand palliative medicine when medical education professionals are split in their views of end-of-life care? A 2002 national survey of Medical Education Deans about end-of-life care in the curriculum revealed that a majority of the deans opposed required courses or clerkships that focused on end-of-life care.

[Hospice Care]

Both teams provide care that focuses on patient comfort. However, hospice care is generally suggested by a physician after all options for treatment have been tried and found to not be useful.