Pediatric palliative care physician Dr. Chris Feudtner from the Children's Hospital of Philadelphia discusses the breadth of hope in pediatric patients and their families in his recent NEJM perspective article. The essay speaks for itself but here's a succinct passage that I especially appreciated:
"...when clinicians discuss the prospect of delivering bad news to patients or their families, we often speak imperatively about not "taking away" or "killing" or "destroying" their hope. Yet if hope writ large is in fact a collection of smaller hopes, to which of the various possible hopes does the imperative refer? Usually, the focus of paternalistic concern is on the distinct hopes of cure or long-term survival, which are exactly the types of hope that are most threatened by bad news. Indeed, such news often elicits feelings of intense sadness or anger in patients and families. But as countless patients and parents have taught me, although these feelings may signify the receding of a particular hope, other hopes remain or emerge: the process of hoping endures."NEJM followed it up this week with a perspective piece by oncologist Dr. Benjamen Corn who discusses the relationship between thanatophobia and health care reform (edit: already commented on by Christian a few days ago, too, but I mention again briefly as it relates to hope).
As Christian mentioned, Corn calls for "conversations led by a team consisting of patient advocates (e.g. chaplains) and medical experts espousing countervailing views regarding the use of resources at life's end." I, too, prefer a more oblique view regarding resource utilization near life's end- while I think it's fair to say that most palliative care practitioners appropriately have a view that wasteful spending exists, this view cannot be central to the practice of palliative care for individual patients. The requisite trust for end-of-life dialogue doesn't spring forth from an attitude of rationing. Rather, the fertile ground for trust comes from attention to the whole person, the person's suffering, and identification of the breadth of hope.
But the hope for a long life remains dominant on the landscape of hope for almost all of us, and cancer centers throughout the country (and hospitals in general) capitalize on this hope. NYT continues their series "Forty Years' War" with a piece highlighting some of the disingenuous cancer center advertisements of recent times. While the Food and Drug Administration tightly (relatively speaking) regulates pharma advertisements for individual drugs, the Federal Trade Commission regulates ads for nonprofit medical centers, and the regulations are much more permissive. The common theme of many of the ads is that if you don't come to Med Center X, you'll miss your opportunity to be cured.
"But marketing executives defend their approach, saying cancer treatment ads tend to play more heavily on emotion than on medical statistics because the ads are not intended to inform people who already have the disease. They are meant to make an impression on future patients, who may decide on treatments years after they have seen an ad, or to sway influential people who might advise a future patient. “This isn’t retail advertising,” said Ellis Verdi, president of the DeVito/Verdi Agency in Manhattan. The agency produced the Mount Sinai ad, which ran in The New York Times, and has created cancer ads for other hospital clients. “This is reputation advertising,” Mr. Verdi said. “There is a very big difference.”Indeed. It's not just the reputation of the cancer centers that is being advertised, but also the reputation of every hospital. If you haven't found the cure at your local hospital (even if it's a cancer center that routinely conducts clinical trials), then it must not be good enough!
Advertising for palliative care services at an individual institution already trying to "sell hope for a cure" becomes tricky in this environment because the message is contradictory. One unspoken message behind the "sell hope for a cure" ads is "we will not only cure your cancer so that you can avoid death, but we'll also make it so it's a non-issue in your life so that you can return to the way things were before. It'll kind of be like getting your car's air conditioner recharged." Why would you need palliative care in that circumstance? A good example is the Mount Sinai radio ad that you can hear in the left sidebar of the article.
Obviously there are many people more savvy than me thinking about how to "change the culture" to make palliative care the norm, but the concept of reputation advertising is relevant to our field and it seems to make sense that this would be a nationwide endeavor rather than institution specific. In other words, instead of trying to convince a patient with metastatic colon cancer and his oncologist in Springfield, Anywhere that he should consider seeing a palliative care service at Springfield General, the advertising message should be aimed at all the healthy people out there everywhere who occasionally think of what it would be like to have a life-limiting illness.* Expectations should be created that counter-balance the message of "we'll cure you and you'll be fine" including:
- We'll help you find the breadth of hope (and there's room to include the hope for as long of a life as possible). Improved quality of life is a big part of this but it's not improving QOL for it's own sake but for the sake of hope.
- The mere possibility of death strikes fear in the heart but the act of preparing for it can reduce that fear (and, in fact, the preparation can be a source of hope).
- Your loved ones are very important to you and therefore, to us as well. (Sounds like an ad for life-insurance, I know...)
The NYT article describes the efforts to put limits on the type of advertising described. For a colorful description of the history of advertising in medicine, I'd recommend this article.
And for more Pallimed discourse on the topic of hope, see here.
*Individual palliative care teams need to take a different advertising approach aimed at referring providers locally, but certainly providers aren't immune to nationwide advertising schemes. I'd be curious to know how Lipitor advertisements during major sporting events influence physician practice (besides the effect of more patients "asking their doctor about Lipitor.") Of course, when consumer demand for Lipitor goes up, Pfizer can just crank up the manufacturing lines...it's a separate dilemma for the field of palliative care, but might be a good one.
10 comments:
I know of a highly reputable physician in Springfield - Dr Nick Riviera (just ask his patient Mr. McCraig).
Your post made me think of several items I've been mulling over the last few months.
First hope: I still need to read the Ehrenreich book. I have noticed however that over the years I have begun to actively engage with my patients in hope language, as well as 'fighting' language (for those who initiate its use with me, e.g. 'he's a fighter.') Nothing fancy here, and probably something that others do all the time, but I've begun to recommend judiciously using such language to my fellows as well - if the patient tells you they are going to fight the cancer no matter what, tell them that you are going to help them fight it, but then specify how you are going to do it: by helping the patient live as well, and as fully, for as long as possible, despite the cancer, etc. etc. Nothing profound here, again, but I'm curious as to how others teach palliative fellows and other trainees about using patient rhetorical framework in this way.
Re: health care costs at life's end. I realize that we are seen by many (and heck we promote ourselves as this w/r/t making an argument to hospitals to fund palliative programs) as cost containers, and I certainly have awkward encounters (rarely, but they happen) with others in the hospital who express great frustration at the amount of resources spent on a dying patient and I realize they expect me to chime in and agree heartily. Sometimes I do - not so much about the fact of resources spent but *how* they're spent ie in a way which is neither going to heal/cure/restore a patient or is even improving/maintaining their 'quality of life.' Dying people are sick people, and sick people 'consume' health care resources, and by god we should be comfortable with that - we should just be constantly, and vigorously, and loudly advocating that those resources are spent Sanely: in ways that either prolong a patient's life at a 'quality' which is acceptable to them, or (if unable to prolong life) then restore/maintain function/'quality' of life for someone, or (if that's impossible) make sure they can die comfortably, in the circumstances that are acceptable to them (at home, or whatever it is).
But think about a world with a perfect health system, one which got the whole preventative medicine and health maintenance thing right: what would lifetime health care expenditures look like? They should be flat throughout the vast majority of a patient's life, with perhaps a few temporary spikes here and there (car crash, treated cancer, cholecystectomy), then rise rapidly and dramatically in a patient's final year/s as they develop a progressive/incurable illness. In this model, most of the resources should be spent on dying patients: assuming we don't cure death this is the best possible health system in the world - one that keeps patients healthy until they get a terminal illness then rains money/resources on them dramatically in the final year/s.
This is pie in the sky stuff of course, we're a long way off from this, clearly, but I bring it up as a way of illustrating why I think we have to be very careful when we engage in the whole health care costs at the end of life discussion, and stick very very closely to the message that dying patients are worth the money that is spent on them - we just need to spend it in a radically better way.
Drew-
there's a dance between gently clarifying prognostic understanding, finding a way to plan for the "worst" yet still permitting this type of hope. i think that the further I go with this work (and the more comfortable I become with identifying other goals of care/patient concerns and discussing prognosis) the easier it has become to "sit" with this type of hope, but it's not always easy for sure.
i wonder if anyone ever gives up hope that their prognosis might be a lot better than it is in reality? i think even those that are entirely realistic still have moments (maybe even for just a flash) where they think "maybe we're all wrong...maybe I'll live another 20 years." i know i've had patients who seem entirely realistic who say this (along with an acknowledgement that they're probably wrong)....so i'm guessing many more think it.
always good to join the fight rather than fighting it. "battles" usually have all sorts of obstacles and identifying those obstacles usually leads to the important conversations that need to take place. also, i'm amazed by how many "fighters" don't want to be resuscitated after informed of the risks/benefits....(ie doctors are often too quick to translate "fighting" into a statement about how they wish to approach every medical decision, when really, most would agree with the battle plan that you describe.)
thanks for expounding the resource utilization towards the end of life thing. agreed.
Does anyone know of any medical center that has launched a multi-media campaign that features their palliative care services? Not just palliative care lumped in with a bunch of other services but the featured part of the advertising.
If no one knows of one then I am now publicly suggesting the first ever Pallimed Prize. It will be awarded to the first hospital to feature the palliative care service in a advertising campaign across three different platforms (TV, internet, radio, newspaper, billboard (freeway or on the campus institution). I am offering $500 of my own hard earned cash to put towards the pool of money. I could see this idea taking off if we get some widepsread support for this.
Does anyone know of any medical center that has launched a multi-media campaign that features their palliative care services?
Funny you should ask.
I once spoke with a member of the most excellent palliative care team at a place which shall remain unnamed, but which some folks might recognize as Man's Greatest Hospital.
Anywhoozle, when I presented her with that same idea - since their palliative care service is indeed an excellent one - she replied that the facility was reluctant to promote a service that could be perceived as a failure of good medicine ("Come here to die."), and was unable to frame the service in any other way that might be perceived in a more positive light.
Personally, I'm counting on the inevitability of the Boomers to lift palliative and end of life care into its rightful place.
So far, that demographic has been pretty hard to ignore when they decide that they want something, and I think we'll soon come to that tipping point where there are more Boomers who've suffered through the agony of having aged parents painfully circle the drain to no good end than there are Boomers who insist on a full court press, no matter what.
For those of us in this field, I think a lot of it is going to come down to luck which, as an old associate used to remind me, is where preparation and opportunity meet.
We just need to be ready.
Have a look at "Weighing Medical Costs of End-of-Life Care" http://www.nytimes.com/2009/12/23/health/23ucla.html?_r=1&hp
Paul McIntyre
I think a national advertising campaign to help raise awareness about end-of-life / dying as you suggest is a nice idea in theory but in reality would be a really tough sell. Most healthy people do not think of dying in terms of the slow, painful deaths that we often see in hospitalized / institutionalized / elderly pts that we often see. They think of death in terms of the spectacular, often violent images that come across in the media. For so many competing interests in the health care field seeking increasingly limited funding, I don't believe advertising palliative care to the public, which often finds the topic morose and depressing, will be very successful.
Anon 12/29: I think the advertising campaign is a 'tough sell' too, to say the least, but Christian has been known to fight Quixotic battles in the past and perhaps this will be one he 'wins.'
I come back though to the story Diane Meier tells frequently - about her wake up call moment when she was a resident I think - I can't remember the details but it involved a patient dying from cancer who spent an extended period of time in a hospital, restrained, being force fed through a feeding tube. No one wants to die like that, but it still does all the time in many different ways, and our approach to care is designed to prevent that. People deserve better, and want better, and it seems like somehow you could 'market' that. ?
There is a way to market this that does not come across as 'death is fine and OK, don't worry about it...' and not so vague that you don't understand what palliative care is. I mean come on advertising sells cancer sticks for crying out loud. I think we have a great 'product' to sell based on feedback from families and patients. With a little money behind it I think the Pallimed Prize, could be a nudge in the right direction.
Quixotic maybe, but it is better to aim for the stars and hit the moon, than to aim for the trees, and hit the ground.
Anon-
If life insurance and funeral services can be sold then I have to believe that palliative care can be sold, too.
For an individual center, perhaps it could be considered the "edge" that attracts patients to leading cancer centers? "I went to XX knowing that I'd be meeting with the world's best doctor for some God-awful cancer but also with the knowledge that even the world's best doctor can't fix everyone. So I was relieved when the world's best doctor hooked me up with the world's best palliative care team. They helped me plan for the ahead by doing a, b, and c. Thanks to the worlds best doctor, my cancer shrank and I'm going to Europe this summer with my wife. Thanks to the world's best palliative care team, I have the peace of mind that everything will be 'alright' no matter what faces me in the future." (a little misleading regarding palliative care? no more and perhaps a little less than some of the ads discussed in the article...) Of course, in order for an individual center to run such an ad, they're really going to need a robust pc service that can meet demands of those coming through the door asking for it.
Or for a national campaign:
Comparison of patient a to patient b who both died...what difference did palliative care made?
All quixotic I admit but Christian's abiding optimism is catching.
Lyle,
Great points on potential messages. I just found this blog post about San Diego Hospice & the Institute for Palliative Care recent marketing approach. From the blog post:
Despite being far and away the leader in non-profit hospice care and palliative medicine in CA, SDH faced numerous challenges in attracting people to its service:
* Public sensitivity about the very topic of hospice
* Widespread misconceptions (that even we ourselves held) of hospices as somber places where terminally-ill people go to give up and die
* Increasingly aggressive competition from for-profit hospice providers in the local market
* Niche target audience
The article may be of interest for those wanting to compete for the Pallimed Prize. Official details to be announced after the Jan 1, 2010.
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