A recent study suggests that doctors may put off holding end of life care discussions that involve subjects like advance directives, hospice or site of death.
Recommendations suggest that physicians hold these conversations when patients have about a year to live, but the data show those guidelines aren’t being followed.
Why? Read more »
*This blog post was originally published at KevinMD.com*
Back in the day when I was a newspaper reporter I completed a biomedical ethics fellowship at the University of Virginia Medical Center in Charlottesville, VA. In addition to sitting in on the hospital’s bioethics committee discussions, I spent much of the week shadowing a nurse in the ICU.
They called her the Death Nurse because her job was to intervene with doctors, nurses, patients and families when the time came for a patient to move from the ICU to hospice. While her title was Supportive Care, she flat out told her me her job was to help people die; not actively, but from behind the scenes by helping patients and those caring for them understand when the time had come to move from curative care to supportive care (email me if you’d like a copy of the article I wrote about her). Read more »
*This blog post was originally published at Debra Gordon on Medical Writing (and other medical topics of interest)*
“We can no longer afford an overall health care system in which the thought is more is always better, because it’s not.” – Peter Orszag
Could anyone disagree? Not really. Which ought to be the first clue that it’s a meaningless truism. I mean, of course more isn’t always better.
But this hasn’t stopped this truism from becoming one of the most popular refrains in health care reform. Most of the time this is directed at one area: end-of-life care. Read more »
*This blog post was originally published at See First Blog*
DrRich does not visit Facebook, much less have a page there. This is because his college-aged children have informed him that he is too old for Facebook. (They tell him that Twitter is the appropriate social network for people of his age, whose brains are clogged with moraines of proteinaceous deposits left by a receding intellect, a pathology which causes the old dears to go off on wild tangents whenever they have more than 140 characters to work with. “Just look at your blog, Dad,” they point out.)
In any case, having not personally viewed Sarah Palin’s Facebook page, DrRich is not sure whether she specifically identified Section 1233 of the House healthcare reform bill – the part of the bill dealing with “Advance Care Planning Consultation” – as the specific hiding place of the now-famous “death panels.”
But whether or not Ms. Palin herself pointed to Section 1233, that’s the section most politicians and most commentators assumed she was talking about (presumably based on the observation that 1233 mentions the words “end-of-life care”). And subsequently, in an attempt to appease the rising anger of the multitude, our elected representatives announced they have decided to remove this offending section from any pending healthcare legislation.
And of course, this decision itself has created a backlash. Supporters of Section 1233 – including many physicians, most advocates of thoughtful end-of-life planning, and all critics of Ms. Palin (who would find it objectionable if she found a cure for cancer) – point out that end-of-life planning in general, and Section 1233 in particular, have nothing whatever to do with death panels. They insist that Section 1233 is badly needed, as it would encourage valuable discussions between doctors and patients on issues related to end-of-life care.
DrRich agrees there are no death panels in Section 1233. He also agrees that encouraging discussions on end-of-life care between patients and their doctors ought to be a good thing. And if it were not for covert healthcare rationing he would probably be enthusiastic about it.
But recall that covert rationing is the “dark matter” of the healthcare universe; it’s the unseen stuff that binds together all the far-flung parts into a coherent whole, and explains all the otherwise inexplicably bizarre behaviors we observe there. Covert rationing corrupts everything it touches, even the good things. So anti-fraud efforts are corrupted into bludgeons to force doctors to place strict compliance with absurd processes above patient care. And clinical guidelines (ostensibly tools to inform and advise clinicians) are corrupted into ruthlessly enforced and legally binding clinical directives from on high.
As a general proposition, we should be vigilant for disguised efforts to corrupt what is useful and good about our healthcare system into instruments of covert rationing. And so we should be concerned about potential mischief from Section 1233 even though it contains no death panels.
Almost as a matter of principle, we should be suspicious whenever public officials desperate to reduce healthcare costs suddenly become passionate and vocal advocates for preserving the individual patient’s autonomy. In this case, we should closely examine our leaders’ enthusiasm for end-of-life planning. For it looks to DrRich like Section 1233 attempts to convert the relatively benign instrument of advance directives into something potentially much more ominous.
In concept, advance directives are good things. Advance directives allow patients to establish beforehand, generally by means of a written document, what types of medical treatments they would want and not want should they develop a serious, life-threatening illness that leaves them unable to express their wishes. Advance directives are supposed to provide guidance to physicians who, functioning in their fiduciary capacity, are charged with acting in their patients’ best interests, even if the patient can no longer express a preference.
Advance directives can spare patients from being subjected to treatments they would consider demeaning, undignified, wasteful, painful or otherwise undesirable should they become incapacitated at a later date. Therefore, well-constructed advance directives should always operate to preserve the individual patient’s autonomy.
However, advance directives are often less than perfect. In particular, they may express a patient’s imperfect knowledge, or they may be imperfectly expressed.
A relatively young and robust individual often cannot know how he/she will feel a couple of decades into the future, when illness strikes and it is time to exercise an advance directive. This imperfect knowledge is a function of human nature. When you poll people with the question, “On a scale of 1 to 10, what value would you assign to the quality of your life if you were permanently confined to a wheelchair?” you will get a much different answer if you ask able-bodied individuals than if you ask people who actually are confined to a wheelchair. The same thing holds when you ask different age groups how they would value life as an elderly, partially incapacitated person. Young people might say they would clearly find life no longer worth living; old people more often are happy enough to go on with their imperfect life as long as they can. Healthy and young people often view the prospects of disability or advanced age with horror; those who actually become disabled (or old) most often find continued meaning there; often they’ll even tell you they have found a more focused and profound sense of meaning than when they were young and healthy.
So there is an inherent risk in signing an advance directive at an age and in a state of health when it may be difficult to visualize how you will actually feel about life years hence, “when the time comes.”
Furthermore, advance directives may contain unavoidable ambiguities that will require interpretation at the time they are acted upon. For instance, many advance directives contain language to the effect that a patient might want to avoid, say, being attached to a ventilator “unless there is a reasonable expectation of a meaningful recovery.” In the heat of battle, what’s a reasonable expectation? What’s a meaningful recovery? How does a physician interpret this language in an elderly patient who has just had a big stroke and needs a ventilator, and in whom (with a ventilator) there’s a 70% chance of surviving, but an 80% chance of recovering with a permanent paralysis? Is this a reasonable expectation of a meaningful recovery?
Experienced doctors know that for a patient who is currently incapacitated and unable to express a preference, a prior advance directive may not perfectly express their present ideas about aggressive treatments, and even if it does, it likely expresses them with some degree of ambiguity. So the doctor may take many other factors into account – their personal knowledge of the patient, the opinions of close family members as to what the patient would want done, and the odds of a long-term recovery if the aggressive therapy being considered is used. Then the physician will negotiate with responsible family members to find an approach that seems most nearly to meet the patient’s presumed desires. The advance directive is often extremely important in making these decisions, but it is not necessarily definitive. The appropriate use of an advance directive requires the doctor to act as a true patient advocate, to selflessly place the desires expressed in the written directive in context with everything else that might affect the patient’s wishes, and then make a recommendation that, to the best of his/her ability, honors those wishes.
The point being that advance directives are not designed – and cannot be designed – to be strictly enforced. They are documents that virtually always will require some degree of interpretation on the scene.
But the appropriate use of advance directives becomes problematic under a system of covert rationing.
Insurance companies have conducted major PR campaigns to push advance directives. And the federal government (even without Section 1233) requires Medicare-certified hospitals to inform all patients about advance directives at the time of every hospital admission. (This is usually done by the admissions clerk who takes your insurance information and has you sign all the releases and forms that give the hospital permission to treat you. These clerks are often fine people, but their explanation of the legally-required advance directive document too often takes the form, “This is a paper that tells the doctors not to keep you alive on a machine like a vegetable.”)
One would have to be credulous indeed to believe that the enthusiasm with which the feds and insurance companies have embraced advance directives arises from their fervor for the patient’s autonomy and personal dignity. Their enthusiasm clearly stems from their desire to cut costs, especially costs at the end-of-life.
But despite years of efforts by the government and insurers, the results have greatly disappointed them. The large majority of Americans have not succumbed to all the overtures urging them to adopt advance directives as a means of protecting their end-of-life autonomy against the greedy and unfeeling physicians, who will always insist on torturing them to the bitter end.
Some insurers have reacted to this disappointment by adopting somewhat more coercive approaches, offering, for instance, to refuse to reimburse doctors and hospitals that provide care against the wishes expressed in an advance directive (thus making advance directives a binding document rather than a general expression of desires). Furthermore, for years physicians have been generally coerced into placing the interests of the third party payers first, which at least threatens to influence how they will interpret the inevitable ambiguities in advance directives. So, as sad as it is to say it, as long as we are operating within a regime of covert healthcare rationing, patients should consider adopting advance directives only very circumspectly, if at all.
DrRich believes that Section 1233 threatens to greatly magnify this problem. Section 1233 “allows” the physician or nurse practitioner providing the end-of-life counseling to fashion an “actionable medical order” that expresses the patient’s desires related to end-of-life care. This order will be widely distributed “across the continuum of care” (presumably electronically, so that everybody taking care of this patient, anywhere and forever, will know about this order).
This, it seems to DrRich, is the real problem with Section 1233, though it is a problem he has not heard anybody else mention. Section 1233 takes the advance directive, which ideally is a guidance document that the physician ought to take into strong consideration when deciding what treatments to offer a patient who is very sick and incapacitated, and converts it into an “actionable medical order.”
A medical order is not subject to interpretation. It’s an order.
Now, DrRich has never heard before – in all his many years in medicine – of an “actionable” medical order. But “actionable” is a legal term of art that indicates that a particular circumstance is appropriate for legal action. So Section 1233 at least implies that a doctor who elects to follow the sense rather than the letter of this actionable medical order (as one does in dealing with a mere advance directive) may be exposing herself to a lawsuit or other legal action, if not by the patient or patient’s family, then by the government.
Furthermore, DrRich finds it notable that Section 1233 does not say or imply that this actionable medical order is to be invoked only if the patient is incapacitated (which is the case for advance directives). What happens, under Section 1233, if a presently sick patient seems to be of sound mind, and (as not infrequently happens) wants to change his mind when push comes to shove? It would not be inconsistent with Section 1233 to treat the actionable order as legally mandatory even under this circumstance.
And for a doctor on the scene to change that actionable medical order, and replace it with a new one that expresses the patient’s present wishes, might not be a simple or straightforward matter. For Section 1233 also spells out what particular steps must be taken to produce a legal, actionable end-of-life order. This detailed process may be fine if it is undertaken when the patient is completely healthy, and time is not of the essence, and there is no active emergency going on. But what if time is a factor in a presently sick patient who wants to change the order? What if that patient is of sound mind, but ill enough that he does not have the luxury to sit through the procedures prescribed in Section 1233? Would it be possible to legally change this patient’s prior actionable medical order under these circumstances?
Now, DrRich is fully aware that supporters of HR 3200, and especially supporters of Section 1233, will call him a confabulationist for dreaming up this interpretation of the proposed law.
But this interpretation, DrRich submits, is entirely consistent with the actual language in the bill. DrRich also finds it consistent with the spirit of 15 years of efforts, by government and the insurance industry, to browbeat doctors into making all their medical decisions with the strictest possible interpretations of legal, regulatory and financial rules foremost in their minds, whatever that may mean to patient care. And it is certainly consistent with covert rationing.
Section 1233 offers to create a new legal and regulatory consideration – the actionable medical order – that must be navigated when one is interpreting patients’ end-of-life wishes. This new consideration, viewed in the context of a growing desperation to reduce spending on end-of-life care, throws a whole new light on what is currently called an advance directive.
Apparently (for who knows what the legislators will end up doing?), Section 1233 is no longer going to be included in a final healthcare reform bill. But DrRich finds it implausible that provisions similar to those found in Section 1233 will disappear altogether. Perhaps they will re-appear as a last-minute amendment to a farm subsidy bill, or to Cap and Trade legislation, or to a Congressional tribute to Billy Mays. One way or another, similar language is likely to show up again in legislation, and likely it will still provide for actionable end-of-life orders, or some other form of advance directives on steroids.
Until these questions are finally sorted out by our elected representatives, DrRich will tell anyone who asks him that they need to be extremely careful when somebody approaches with an offer to counsel them on their end-of-life rights, so as to preserve their end-of-life autonomy. Beware healthcare workers bearing clipboards.
*This blog post was originally published at The Covert Rationing Blog*
Death panels. They are all the trend these days.
I went to Home Depot to look for some, but couldn’t find any. There was some drywall of doom, tiles of the abyss, and sheet rock of destruction, but no panels. I guess the Obama administration has bought them all.
Honestly, I am not sure what the “death panel” fuss is about. Everyone dies. There are times it is a surprise, but many times it is expected. When it is expected, shouldn’t people plan for it? Shouldn’t we encourage people to plan for it?
The focus of a physician is twofold: to prolong life and to minimize suffering. We practice preventive medicine to keep the person from avoidable pain and/or death. The younger the patient is, the more we call their death things like tragic, pointless, and distressing. We go to great lengths to save the life of someone who has many potential years ahead.
But there is a point when things change. There is a point when the focus shifts from quantity of life to quality of life. There is a time after which a death is no longer tragic, but instead the end of a story. My focus as a physician shifts from trying to find and prevent disease, to maximizing function and minimizing pain. When does this happen? It depends on the health of the patient. But eventually, ignoring one’s inevitable end becomes more tragic than the end itself.
I had a man in my practice who had advanced Alzheimer’s disease. I cared for him before he started his decline, and so had a good chance to know both him and his family. They were people of strong faith, accepting the hard things in life as being from the hand of God. The children took their father’s condition not as a horrible burden, but an opportunity to pay back the man who had given them so much. There was no fear of illness or death.
His wife died fairly soon after I started caring for them. He grieved greatly when she died, but was so surrounded with the love of their children that his grief was short. He spoke often of her in subsequent visits, talking about her as if she was not far away.
As he became increasingly short in his memory, my relationship with their children grew. You can tell a lot about people from their children, and these children were a dazzling crown of honor to these two lovely people.They always came asking good questions, patiently dealing with their father’s confusion, anxiety, and occasional outbursts. Together we worked to maximize his quality of life. When I suggested we stop cholesterol medication and cancer screening tests, they understood. Our focus would not be on the length of life, but the quality of time they could spend with their father.
I was shocked, therefore, when the report of his admission to the hospital came across my desktop. He had chest pains and some difficulty breathing. In the emergency room, a plethora of lab tests, x-rays, and other studies were done. The hospitalist physician on call felt there was a good possibility of heart attack or pulmonary embolism (blood clot to the lung). My patient was sent to the ICU, where he underwent CT angiography, serial lab tests, and even a stress test to rule out heart problems.
I was mystified as I read these reports; the family clearly understood that prolonging his life wasn’t the goal. The patient was ready to die and join his wife, and the children were very comfortable talking about his eventual death. These reports made absolutely no sense with what I knew of this man and his family.
He looked his normal self when he came in to my office for a hospital follow-up. I questioned the daughter about the details of the admission, which she recounted carefully. Then I paused and asked her, “Can I ask you one more thing?”
She smiled at me, “Of course, Dr. Rob” she said gently.
“I was honestly a little surprised when I read about your father’s admission to the hospital. It seems like they pulled out all the stops, even putting him in the ICU. Did they ask you if this is what you wanted? I thought that you wouldn’t want to be that aggressive.”
She thought about what I said and a puzzled expression slowly appeared on her face.
“Did you ask to have everything done, or did you just follow what the doctors at the hospital told you?” I asked.
“They didn’t ask us. We just did what they told us we needed to do.” she said, now scowling slightly.
I explained to her that they need to make their wishes known in advance. If they don’t say anything, the doctors will assume that you agree with what they are doing. As I told her this, she nodded and looked down sadly.
“It’s OK what you did” I reassured her. I patted her father on the shoulder and added, “he looks great now. I am glad I get to see him again. I just want you to know what to do if it happens in the future. You never know what will happen, and I’d hate for him to suffer needlessly.”
This one short hospital stay undoubtedly amassed a bill many times that of all my bills over the 12 years I saw him in my office. My years of care, long conversations, and real personal connection built with this man and his family are worth only a fraction of a few days of unnecessary care. This care was not demanded by the family. It was not done because of denial or ignorance; it was because the family wasn’t prepared for the mechanics of the hospital stay. I never had that conversation with the family until after this event.
Politicians have labeled this merciful conversation as an act of rationing. That is not only ignorant, it is shameful. Talking to people about end-of-life issues will certainly save money. But it’s a contemptible step to imply that this money is saved by killing the elderly. It’s more wrong to make money off of keeping them alive unnecessarily than it is to save money by letting them die when they choose.
This is politics at its ugliest – taking a provision that will reduce suffering and help people and pervert it to be used as a tool to scare the people it will help. The discussion about healthcare has been subverted by those who want poll numbers.
Shame on you.
*This blog post was originally published at Musings of a Distractible Mind*
It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…
I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…
Book Review: Is Empathy Learned By Faking It Till It’s Real?
I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…
The Spirit Of The Place: Samuel Shem’s New Book May Depress You
When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…
Eat To Save Your Life: Another Half-True Diet Book
I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…
