Can Advance Directives Be Salvaged?

DrRich | February 3rd, 2011 - 7:29 am

Podcast:

____

This is the first in a series of articles on End-of-Life Care and Covert Rationing.  The second article can be found here.

____

It is easy to have missed it, because it went by so quickly.

On January 1, the White House announced a new policy that would have paid doctors for discussing end-of-life planning during their Medicare patients’ annual “wellness visit.” Under this policy, physicians would be paid to encourage their patients to establish an advance directive, which would guide medical care if the patient became incapacitated from illness, and could no longer make medical decisions for him/herself.

But on January 5, the new policy was suddenly revoked. It was revoked, CMS lamely explained, because it had not been implemented using the correct process. But, as anyone would know who watched Congress make Obamacare the law of the land, this could not possibly have been the real reason.

The real reason, of course, has to do with the firestorm this new policy threatened to unleash, just as the House of Representatives was about to be taken over by the cretinous opposition party.

As regular readers will recall, the Obamacare bill originally included similar language on advance directives. Physicians were supposed to urge their patients, repeatedly if necessary, to establish advance directives, and their success in extracting advance directives from their patients was to be one of the “performance measures” by which doctors would be judged to be in good or bad standing with the Central Authority.

But then Sarah Palin said “death panels,” and a furor ensued. The provision on advance directives was quickly removed from the Obamacare legislation, as if Congress was admitting that Ms. Palin had been correct and they had been caught out.* Similarly, the effort last month to reinstate the provision failed to stick for fear of criticism at a bad time.

_____
*The original advance directive provision in Obamacare, of course, had nothing whatsoever to do with “death panels,” since there are no panels of any sort involved in establishing advance directives. Rather, the entities that some might call death panels, and which DrRich has chosen to call GOD panels (Government Operatives Deliberating) – that is, panels of distinguished experts that will determine, by means of “guidelines,” which patients will get what, when and how – remain fully operative within Obamacare.
_____

DrRich has nothing against advance directives, and indeed, thinks they are a good idea – in concept, at least. Advance directives allow patients to establish beforehand, usually by a written document, what kinds of medical treatment they would or would not want should they fall victim to a serious, life-threatening illness that leaves them unable to express their wishes. Advance directives are supposed to work by providing guidance to their physicians, who, in their fiduciary capacity, are charged with acting in the patient’s best interest.

A well-constructed advance directive allows patients to choose to spare themselves from demeaning, undignified, painful or otherwise undesirable medical procedures and treatments, should they become incapacitated at a later date. “Well-constructed” implies that the advance directives are clearly and concisely written, that they honor the ethical and legal norms approved by society, and that they provide the physician with clear guidance.

But it is more difficult to write a “well-constructed” advance directive than might at first meet the eye. The major problems are two-fold: Advance directives often express imperfect knowledge, and they are often imperfectly expressed. These limitations mean that in appropriately exercising an advance directive, often the physician cannot follow them to the letter, but must interpret them according to the circumstances at hand.

A healthy and relatively robust individual cannot always know how he or she will feel years into the future, when illness strikes and it is time to exercise an advance directive. Every doctor has seen critically ill patients who, despite having advance directives to the contrary, unhesitatingly choose to be attached to a ventilator when the time comes, for instance, rather than face certain imminent death. So experienced doctors know that advance directives do not always indicate what patients will actually choose to do when the time to make a choice is upon them.

They also know that, while conscious patients have the opportunity to repeal their advance directives, unconscious or incapacitated patients do not.** So, in exercising an advance directive, the conscientious physician interprets that directive in light of many other factors, such as, her personal knowledge of the patient, the opinions of family as to what the patient would want done, and the chances of a long-term recovery if the therapy being considered is used. Then she will negotiate with responsible family members an approach that appears to meet the patient’s presumed desires.

____
**Conscious patients can repeal their advance directives in theory. DrRich has witnessed actual doctors, however, arguing vociferously against using a medical therapy that a sick patient now desperately wants, because years ago the patient signed an advance directive expressing aversion to that therapy.
____

Therefore the advance directive in many cases is an important part of the decision-making process, but it is not the only part. The appropriate use of an advance directive requires the doctor to behave as a true patient advocate, to selflessly place the desires expressed in the directive in context with everything else that might affect the patient’s true and current wishes, and then make a recommendation that, to the best of his or her ability, honors those wishes.

Unfortunately, doctors can no longer act primarily as their individual patient’s advocate. Indeed, physicians are officially enjoined (by the New Ethics formally adopted by their own professional organizations) to give the needs of society at least equal consideration. And so, as has demonstrably happened with other “guidelines” in medicine, it is inevitable that advance directives will be reduced to a legal edict, which must be followed to the letter if the physician wishes to remain clear of the Department of Justice.

The likelihood that there will be no room for interpretation means that constructing just the right kind of advance directive for yourself – one that will be precisely suitable to any contingency that may occur – has become extremely difficult. If you get the details just a little bit wrong for the circumstances that actually arise, the price you pay may be very heavy. It would be better to have no advance directive at all than to have one that is misleading or ambiguous. Advance directives must be written with extreme care, and only after long, thoughtful consideration.

That is not how the government would have it, however. For many years now, the Feds, under the Patient Self-Determination Act, requires hospitals to inform patients about advance directives at the time of every hospital admission, and to invite them to sign one. To say this is a less than ideal time to implement an advance directive would be something of an understatement. Asking a patient to sign an advance directive at the time of hospital admission, often by including it in the pile of routine and mind-numbing legalistic documents which patients must sign if they want to receive medical care, and often with no more guidance than that provided by the admissions clerk (who might explain, “This tells the doctors you don’t want to be kept alive on a machine like a vegetable,”) tells us something about whether the true motive for advance directives is to protect the patient’s autonomy – or to reduce costs.

Having the discussion in a doctor’s office these days, sadly, might not be much better. The Central Authority knows that squeezing what really ought to be at least a 30-minute discussion into a 10-15 minute office visit already packed with Pay for Performance requirements (while providing the added threat of punishment if the physician fails to extract an advance directive from the patient), will yield, at best, a signature on a boiler-plate document.

But despite the slap-dash method by which such a document may be implemented, it is a document whose language – when the time comes – will be exercised with all the legalistic exactitude of a contract attorney by any doctor who knows what’s good for him.

DrRich thinks that Americans are right in being suspicious of the big push they are seeing to urge advance directives upon them. Invoking “death panels” in this regard is utterly inappropriate, but the end result will suffice. It is good that we have all been given pause.

Still, the concept of advance directives is a good one, and DrRich thinks most Americans might do well to have one. Despite the damage that is being done to them, DrRich thinks advance directives can be salvaged. To this end, DrRich suggests several steps we can all take in executing an advance directive that will actually do what we want it to do:

1) Don’t be pressured into implementing an advance directive by anybody whose career depends on keeping the Central Authority happy. Unfortunately, this likely includes your doctor if you are not paying your doctor yourself.

2) Don’t sign a boiler-plate document. These likely will have been drafted with the interests of the Central Authority in mind, with the help of very smart lawyers, and when these documents are called into use in all probability they will be interpreted for the convenience of the Central Authority.

3) Try to keep your advance directive from showing up in an electronic medical record. Write it yourself, and store it where your loved ones can find it when they need it. Give a copy to your spouse, your children, and perhaps (if you have a direct-pay doctor who works only for you) your physician. This way, since your advance directive will not be immediately available to hospital personnel if you are suddenly incapacitated, no unfortunate and irreversible decisions regarding the aggressiveness of your medical care can be made until your loved ones are notified.

4) Write your advance directive as a general guideline, with as few specifics regarding particular types of medical care as possible. You should assume that any type of treatment you mention in a negative light will be withheld under any and all circumstances, including circumstances you may not be aware of in which you would want that treatment.

5) You are not writing your advance directive for the doctors (it is most tragic that we can no longer trust doctors in this regard!); you are writing it to help your loved ones make the right decisions for you, perhaps despite the doctors. So your goal should be to clarify your general desires for your loved ones. Discuss your advance directive with your loved ones after you have written it, and ideally, before you have written it. Your written words will remind them of your wishes when the time is right.

Lest you think, Dear Reader, that  DrRich is merely being sarcastic  here (and why would anyone think so?), he is not. DrRich himself has an advanced directive that attempts to follow these rules. The document is stored at home with his important papers. Mrs. DrRich knows where to find it, and knows DrRich’s general feelings regarding these matters. With the guidance he has provided, DrRich trusts her and his children to make these important decisions for him. For anyone who is interested, DrRich’s advance directive is reproduced, in its entirety, at the end of this post. (The general language, which has been adapted and revised by DrRich for his own use, was originally suggested to him by a good friend who is a superb internal medicine practitioner.)

So. Advance directives are a very good idea, but unfortunately, have been identified by the Central Authority as a potentially powerful cost-cutting tool. Even before Obamacare, certain HMOs were refusing to reimburse hospitals or doctors that provided medical care that seemed to go against specific language contained in an advance directive. That, of course, was child’s play. Now that the Central Authority has gotten hold of them, advance directives will likely be treated the same way as other guidelines are now treated in medicine, that is, as edicts, and thus as vehicles for the criminal prosecution of medical personnel who deign to “interpret” them.

This means that if you wish to take advantage of the benefits which advance directives can provide, you will have to proceed very, very carefully.

____

DrRich’s Advance Directive:

If I am able to communicate my wishes by any means whatsoever, then I wish to make my own decisions regarding my own healthcare. If, despite my ability to communicate, my condition makes it inconvenient to fully inform me of my situation and all my treatment options, then until such time as it becomes sufficiently convenient to do so, I want everything possible to be done to sustain my life and effect a recovery.

In the event of an incapacitating illness in which I cannot communicate, the basic guideline initially should be to do everything possible to sustain my life and effect a recovery.

After a reasonable period of time (in general, I would consider a week to be reasonable) if no progress has been made in the recovery of my mental function, and the likelihood of mental recovery is judged to be small, then withdrawal of life-sustaining care should be strongly considered. To help my wife and/or children with this decision, I would like to have an evaluation by a neurologist to help clarify the prognosis.

If improvement in my mental status has been made, then efforts to sustain my life and affect a recovery should be continued.

If at any point in my care there is a period of at least two weeks in which I am persistently unable to carry out meaningful communications sufficient to make my own wishes known (in the opinion of my family members and the neurologist), and the likelihood of mental recovery is judged to be small, then I would consider the withdrawal of life-sustaining care to be a blessing.

13 Responses to “Can Advance Directives Be Salvaged?”

  1. Michael A. Smith, M.D. says:

    Thank you for the AD. Mine has changed as a result and has been forwarded to all principles.

    I trained during the AIDS heyday, and we pushed these. Unfortunately, we lost several young and relatively healthy gentlemen by overtly legalistic interpretations of flowery, poorly construed ADs. Part of their legacy is in my never forgiving myself for being “the grunt” that allowed it to happen.

    I wanted you to know that their is a healthy underground of physicians that won’t let our patient advocacy status be usurped. We function as a cell-structure, and are on a need-to-know basis, so I cannot give you an assessment of our numbers. This silent brotherhood is unlikely to win, but we refuse to lose.

    Mike

  2. DrRich:

    OK – so I see your points and agree that the idea of advance directives in the new legislation raises definite questions when it comes to balancing a patient’s rights with public needs.

    As I read your piece here, I hear you saying that I need to fear the plug being pulled sooner than I would like if I commit my wants and needs to paper.

    But I seem to be missing something. We also know that Americans are over treated and over tested so those same doctors (who you suggest will pull the plug) can make more money from us. The minute the plug is pulled, that’s the end of the gravy train. No more income from that patient.

    To me that is a real balance to your plug-pulling fear check.

    So – what am I missing?

    Trisha Torrey
    Every Patient’s Advocate

    • DrRich says:

      Trisha,

      What you’re missing, in my opinion, is that we have reached a tipping point, and patients need to be at least as concerned with doctors withholding useful medical services due to fear of federal prosecution, as they are with doctors offering wasteful services due to greed (or ignorance or fear of lawsuit). And I am not only talking about end-of-life-services.

      I have written extensively about this. Under our rapidly rising new medical paradigm, doctors are to to follow treatment directives (packaged as “guidelines,” but enforced as edicts) handed down by all-powerful government-appointed panels of “experts.” Failing to follow the guidelines to the letter, under any and all circumstances, is already being treated by the Feds not merely as substandard practice, but as criminal activity. Doctors do not work any more for the patients, in any sense, but for the Central Authority. This takes covert healthcare rationing to a whole new level.

      Obamacare accelerates this process, but it is a process that was in rapid ascendancy even before Obamacare. In going after electrophysiologists for failing to follow a particularly controversial and weakly-supported aspect of ICD guidelines, for instance, the DOJ is not relying on any provision of the new legislation.

      So my message is: By all means generate an advance directive to prevent (greedy, avaricious, or malpractice-suit-averse) doctors from subjecting you to unwanted medical services when you are incapacitated. BUT, be aware that that your advance directive is, in today’s environment, likely to be treated very differently than it has been in the past, and very differently than you might think.

      In my opinion, therefore, patients should write their advance directives primarily to give their loved ones the guidance and authority they will need to fight for what you would want to happen. It should be primarily a document to guide your loved ones, and not for the doctors or the healthcare system to interpret to their own benefit.

      Rich

  3. Trisha,

    If I might add to Rich’s response, one other thing you’re missing is a single abbreviation: ACO. This reincarnation of HMOs will make it more profitable for the organization the doctor works for (the ACO) to pull the plug. Voila! Mission accomplished.

    I’ve written extensively on my Road to Hellth blog about physician payment and the various incentives and pitfalls that different payment structures create. IMHO, the best way for patients and doctors to align interests is to have clinicians remain independent business entities and be paid by the hour for their time, just like accountants or other consultants. Its the approach that yields the best balance of patient advocacy and economic sustainability.

  4. rapnzl rn says:

    Dr. Rich,

    While I agree with 99.9% of your ‘pure’ thought, there is one teeny-tiny point I have to raise.

    The Central Authority currently requires that we ‘inquire’ of the existence of an Advanced Directive on admission to the hospital, and ‘request’ a summary of said wishes if a hard copy is not provided, but a directive to ‘implement’ such Advance Directive is not. (Yet.) Kind of a big leap there, although I do share your sentiment.

    I just hope all this discussion about EOL issues causes folks to do what they really NEED to do….i.e., sit down and discuss their wishes with their loved ones. I’ve seen too many situations where next-of-kin (or lack of same) make or more often break the dying process because that has not happened. And in oncology, that can become uglier than anyone should ever have to be exposed to.

    Since I haven’t had the misfortune to have my POA scanned into the system yet, I thank you for the insightful advice.

    Insightful blog, as always. I anticipate nothing less.

  5. DayOwl says:

    Since the whole point of the new paradigm is to ignore the individual’s wishes and needs, the advance directive will no longer be a concern. Advance directives are framed as giving the patient power over decisions regarding his or her care. That doesn’t go over well with medical administrations or insurance companies. The patient is simply outnumbered. (Doctors may appreciate the help, but they’re outvoted too.) It appears that AD’s have been distorted to become a vehicle to deny the patient power. “Sign this form” and you give away the right to have any further say in your care. As such it is merely a formality.

    During this time of transition they might provide some needed guidance, but eventually they will be unnecessary because all decisions will be made according to guidelines anyway. That’s what happens when a third party is inserted into the process. I’ve pointed out on many forums and comment sections that the third party is the problem, not the solution, but few seem to get it.

  6. Vic Havens says:

    It occurs to me that some may want an additional paragraph that states something like, “This document is the sole valid advanced directive regarding my health care notwithstanding any other document on file with anyone.” Additionally, a signature and date would be good.

  7. Stanley Sokolow says:

    Regarding Vic Havens’ comment: You wouldn’t want to irrevocably adopt an advanced directive the way you suggest. It’s fine to say that the AD revokes all prior ADs, but while you still have your wits, you want to be able to change your mind when presented with new facts or new situations. So, no one AD should say that it’s the only valid one. Indeed, state laws preempt such an irrevocability clause.

  8. PF says:

    DrRich: In your own advance directive, when you use the phrase “affect a recovery,” what you really mean to say is “effect a recovery.”

    It’s a common confusion of terms.

  9. Susan Parker says:

    I was ready to be offended when I saw the death squad rhetoric, can’t help myself since i am a nurse practitioner working in a palliative care program for a hospice. Instead I agree with the reasoning behind writing and discussing with family members what our wishes may be in (what we all hope) is the very distant future. Giving them a document with some specifics could be very kind for them as well. The 15 minute office visit with my primary care could not come close to setting the stage for this decision making and the getting it down on paper or in an EHR for the sake of it is silly.

  10. Joan Baldasare says:

    I like your advance directive for the immediate time. It is concise and clear. Is this considered legal in all states? Does it have to be notarized? As far as I know this can be denied unless it complies with the state required advance directives. Have you reviewed the five wishes directives? These will take more time to fill out but include all aspects of care- emotional and physical. You can find this on line– aging with dignity- five wishes.

    • DrRich says:

      Joan,

      My advance directive is not meant to fulfill any legal requirements. It is not meant to be supplied to any official, or even to any physician (since most physicians will be functioning as agents of the Central Authority from now on). It is meant purely to guide my loved ones should I become incapacitated, and they have to make decisions about my medical care.

      I am not interested in supplying the Central Authority with a notarized document which their agents can interpret, when the time comes, in the way that suits the Central Authority best. I of course do not want to imply that I don’t trust the sincere beneficence of our Central Authority. But as an Old Fart whose continued survival means that I will continue sucking up Social Security and Medicare resources, and who continues to draw down the nest egg I’ve accumulated (which otherwise would be turned over to the Central Authority, assuming the Progressives eventually get the inheritance taxes to where they want them), I have a hard time understanding why my life would be worth a bucket of spit to the Central Authority. When it comes to interpreting my advance directive, the Central Authority and its agents will be very “conflicted.” I don’t want to give them the ammunition. I’d rather just give this advance directive guidance to my family, and trust them to fight it out as best they can with the doctors.

      Rich

You can leave a response, or trackback from your own site.

Leave a Reply