Thursday, April 16, was National Healthcare Decisions Day. We probably should have made note of it.
But then again, we’ve pretty much ignored it since one post I wrote in 2008 making note of the day and NDY’s take on it:
In case you missed it, today is National Healthcare Decisions Day (NHDD). We’re all invited to “join Americans across the country to talk to others about your future healthcare decisions and to complete your advance directive!”
We’ll pass, at least when it comes to joining with the coalition promoting this effort.
We listed some of our reasons and rationale for opting out:
There are many problems with the marketing and the promotion of advance directives right now, but I’ll focus on two:
- There is no warning to the public that advance directives might not be of any use at all if physicians don’t agree with your choices. Under the ever-increasing influence of “futile care” policies, physicians and hospitals may deny you life-saving treatment even if your advance directive calls for it and your health-care proxy demands it. At least part of the reason this “elephant in the living room” isn’t addressed may be that many of the medical organizations participating in NHDD support “futile care” policies.
- In discussions with disability advocates, advance directives are described as a way to state what you do want in the way of treatment as well as what you don’t want. And, in all fairness, some of the forms being used provide space for those options of desired treatments. However, the long-term focus on – and usage of – the problematical term “end of life,” has resulted in “advance directives” being framed as an “end of life” issue, as can be seen in the “facts” section of the NHDD website. On this page, you’ll see that the discussion quickly leaps from “advance directives” to “end of life” issues. This inevitably encourages most people to think about “advance directives” as being about ending their lives, rather than making a clear statement of “treatment preferences.”
So forgive us if we don’t join the current effort. We do think it’s best to make sure you pick someone you trust to make decisions on your behalf should you need that while in the hands of the medical system. We just don’t want to sign onto this flawed effort and product.
There’s little evidence that there’s much that’s gotten any better, so there’s little to give us reason to summon up some enthusiasm for the day.
But we do have something to share.
In 2013, NDY President and CEO Diane Coleman submitted comments to the Institute of Medicine’s Committee on Approaching Death. The comments included this:
A 2012 study in the Journal of Emergency Medicine[14] found that having a living will might give people a false sense of security about getting the treatment they want. Based on survey responses from more than 700 physicians in 34 states, researchers from the University of Pittsburgh Medical Center found that over 50% of physicians misinterpreted a living will as having a “do not resuscitate” (DNR) order when it did not. About the same percentage over-interpreted DNR orders as meaning no treatment except “comfort care” or “end-of-life” care.
The study shows that there is a frighteningly high likelihood that having a living will or DNR order will result in physicians withholding curative treatment that a patient actually wants. What are the reasons for the interpretation problems that have been documented? And what are the risks that the same type of misinterpretation is or will be an issue in the POLST context? Research is needed before sound policies can be developed. (Here’s a link to the abstract of the study cited here.)
That brings me to the present. This morning, Dr. Ferdinando Mirarchi, lead author of the article discussed and cited above, emailed Diane Coleman with a video to share. The video, “Good Practice,” is by Emergency Room physician Dr. Michael Barton. The video is close captioned and has additional text embedded in the video; they don’t get in the way of each other – much. 😉 Video below. Enjoy!
Thursday April 16 (not 17). Connecticut launched its MOLST pilot on April 16, and I was there to speak about what we are doing differently from the rest of the nation. We are the only state so far where the disability community has had robust input into a POLST paradigm program.
it may interest you to know that in the UK, a house of lords select committee inquiry also found that our ‘advance directives’ and the mental capacity act are not understood at all either. Lord Hardy who chaired the committee, concluded that ‘tens of thousands of people ‘ across the uk had been tick boxed as ‘incompetent’ by unqualified healthcare staff, so they could be subjected to enforced ‘deprivation of liberty ‘ orders, and either given healthcare they didnt want (including the lethal ”liverpool care pathway ‘ drugs diamorphine/midazolam /cyclizine in a syringe driver until they die) and/or forced into care homes against their will to save the cost of providing assistance at home http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/news/mca-press-release—13-march-2014/
The National Health Service however, is still distributing Advance Directives that advise you CANNOT refuse ‘pain relief and sedatives’ in an advance directive – which makes euthanasia kinda compulsory, only done under the guise of ‘terminal sedation’
No one can get anywhere with court cases …entire thing smacks of a coverup dreadfully.
Once tick boxed as ‘incompetent’ in the UK, you’ve had it.
We’ve had a daughter (Wanda Maddox) jailed by a secret court for trying to rescue her dad from being murdered by the state here – http://www.dailymail.co.uk/news/article-2313760/Wanda-Maddocks-Jailed-secret–trying-rescue-father-care-home-believed-die.html Her brother was locked up too for trying to feed him!
Missouri, apparently started all of this liiving will business with the introduction to the “advance directive” when their 1985 Statute, RSMO 459, Declarations, Life Support, that requires two witnesses to any request by a patient to shorten life by means of removing or withholding of life sustaining treatments was heard by The Supreme Court in 1990 and found to be constitutional,
The Nancy Cruzan Case established that competent citizens with terminal diseases, and, also, even before patients are diagnosed with a terminal diseases, have a constitutional “liberty” right to prepare a directive when the matter is pertinent to refuse medical treatment, life support, and die, and,, also, to prepare an advance directive in contemplation of a future terminal life threatening event. SCOTUS also found that Missouri has a right to mandate clear and convincing evidence of the patient’s choice or decision to refuse life-sustaining medical care, i.e. two witnesses are required under Missouri Law to any DNR placed by a physician into the hospital chart of a patient who has NOT provided an advance directive or by a surrogate of a patient who hasn’t provided an advance directive that authorizes the DNR.
Only a physician can prepare a DNR (the ultimate advance directive) that is based on an advance directive of the patient provided to the hospital or based on the “witnessed” and signed informed consent of the patient or surrogate who has NOT prepared an advance directive under the provisions of state law that would permit the physician to place a DNR code status in the patient’s hospital chart.
This Supreme Court decision in 1990 on the constitutionality of Missouri Law, Chapter 459, Life Support, opened the door to the introduction of the “advance directive” – the “living will” to the entire United States. This was engineered through the Congress by the esteemed Senator John Danforth of Missouri in 1991, just months after the Supreme Court Decision on Cruzan. This introduction took the form of the 1991 Patient Self Determination Act, passed by a bipartisan Congress. (We have to know that SCOTUS hears ONLY those cases that they want to hear in order to settle certain matters in the law in contemplation of public policy goals being pursued by The Congress and the Executive. Medicare had asked Congress for the law of the 1991 PSDA)
The Medicare HOSPICE entitlement was also passed into law by The Congress in the 1985 time period and there is no doubt that one of the primary goals of the HOSPICE Medicare entitlement together with the federal 1991 Patient Self Determination Act, authored by Senator John Danforth of Missouri, was to save money for Medicare and Medicaid when educated terminal patients would ELECT and/or CHOOSE to refuse life-sustaining treatments and die under the less expensive Hospice/palliative care entitlement at home or in a residential nursing home they paid for, and NOT in expensive ICU and CCU units in our nation’s acute care hospitals.
The 1991 PSDA presumed that a physician who would give a terminal prognosis to a patient would educate the patient in the “informed consent” process as to the pros and cons of curative care where everything would be done to sustain life in full code status as opposed to Hospice/palliative care wherein the patient could ELECT to shorten suffering unto a certain death with the “advanced directive” that was prepared under the provisions of state law that would then give the physician the legal right to place a DNR in the hospital chart.
The fine line between the premise of “prolonging death” or “shortening life” or “hastening death” would be a matter of concern but the patient would retain the autonomy under the 1991 PSDA to make the final decision after consultation with the physician. The Missouri Supreme Court in their deliberations on the Cruzan case stated that physicians should not have the right to shorten the lives of patients without their informed consent. The matter of the unilateral DNR has not been decided by the courts. There isvery little case law available as provided by Thaddeus M. Pope, the leading historian and expert on Medical Futility and the Law. His article on the treatment of Involuntary passive euthanasia of patients in the US Courts is an eye opener.
But, of course, almost immediately after the 1991 federal PSDA became law that prohibited discrimination, the matter of “medical futility” and “due process of law” came up in the states and the bioethicists have been discussing and debating medical futility matters at great profit with no standard legal definition or solutions being found since 1991. Only one state, Texas, has attempted to define medical futility under law and to provide due-process procedures under State law.
Most of the States did implement and interpret the 1991 Patient Self Determination Act to allow hospitals to invoke “medical futility” etc.. and use in-hospital ethics committees to mediate disagreements but some states are recently changing their laws to require procedural protections for patients in their states to protect the patients from the extrapolation of unilateral DNR code status into the hospital charts of patients without their informed consent.
It is obvious that the states who are amending their PSDA Law to provide procedural protections against unilateral DNR code status are doing so because of the misuse and misapplication of DNR Code Status by hospitals in the past several years either for the purpose of protecting their bottom lines and/ or for making decisions about “quality of life” that the hospitals already know know will not be sanctioned by the courts.
Unilateral covert and overt(default) DNR Code Status appears to be a violation of Missouri law, Chapter 459, as well as federal law, the 1991 PSDA. That is, the federal law and Missouri law don’t mandate that patients provide a hospital or a physician with an advance directive and the law of the 1991 PSDA prohibits discrimination against those patients who don’t provide Advance Directives to the hospitals under the provisions of the 1991 PSDA. The silence of patients is not supposed to be held against patients, that is, the silence of a patient doesn’t permit hospitals and hospitalists to overtly or covertly shorten that life with unilateral DNR Code Status because of either medical futility or fiscal futility without due process of law. .
These two different standards of care established under Medicare law are reimbursed by Medicare but from the beginning and under current law, 2015, Medicare patients can’t be on BOTH Curative Care and Hospice Care at the same time Medicare Hospital Insurance Part A provides the Hospice entitlement. ( Interestingly, the Advantage Insurers, who sell Medicare Hospital Insurance at great profit don’t have to provide Hospice Care in their policies, and the patients must return to “original Medicare” in order to be eligible for Hospice care. )
In 1991, when the PSDA was passed into law, Medicare was reimbursing for life-sustaining treatments that were approved under Medicare guidelines. However, fourteen years later, starting in 2005, when President Bush signed an Executive Order that authorized Pay for Performance Reimbursement protocols under Medicare and Medicaid and the Congress introduced the Hospital Adverse Event Law and Hospital Safety Reporting law, the DNR Code Status started to be misused and misapplied to protect the bottom lines of the hospitals. So often, reimbursement under Part A of Medicare Insurance and Part C of Advantage Medicare insurance are being denied by original Medicare and their private Big partners, the Advantage Insurers.
Specialist physicians were not put under the provisions of the PSDA and, therefore, felt they had no legal duty to seek informed consent for Curative Care as opposed to palliative care from their elderly/disabled Medicare/Medicaid patients with terminal diseases. Why would they? Under law, physicians are paid up to the diagnosis group cap for the disease/cancer they are treating —no matter the age or comorbidity factors of the patient. Why would they want the legal obligation of seeking informed consent for curative care as opposed to palliative care/Hospice from their patients? This would not be in their best interests and many physicians felt that if they were put under the provisions of the 1991 PSDA, this would have been bad news for patients who would be deprived of the “chance” for curative treatment under descriptions of “non beneficial” treatments that, by law, would not be reimbursed by Medicare and private insurance. The ugly word “rationing” could be part of the picture.
Now, we have this MESS that both political parties want to hide from the public because both political parties and their Executives are complicit in producing the MESS. The Congress has failed to clarify the provisions of the 1991 PSDA for the states and the courts have signaled that they want the legislatures and not the courts fo clarify the provisions of the 1991 PSDA.
It looks like Missouri is trying to HIDE its 1985 Life Support Law from the public as both the House and Senate in Missouri introduce bills for Simon’s Law in 2015 that would require the signature of one of the parents of a minor infant or child to any DNR placed in the minor’s hospital chart.
The trouble is that ALL of these Bills are amending another Chapter of Missouri law and not the Life Support Chapter 459 that is still valid and that deals with life support. I have complained to my Missouri Representative and Senator and am waiting for some explanation of WHY they are not amending the pertinent statute,. I have been waiting for over two years for an explanation from the Legislative Office of The Attorney General of Missouri concerning the unilateral covert DNR placed in my husband’s medical chart in a Missouri Hospital in 2011.
I wonder if Senator Danforth had any idea of how his signature law, the 1991 PSDA, would and could be used against the citizens of Missouri in latter years. I’m sure he didn’t because all of the law in hisII time period discouraged both passive and active euthanasia and embraced the autonomy of the patient and the sanctify of life that is protected by the state.
In the meantime, we can know that the advance directive can be dangerous and, also, the absence of an advance directive can be dangerous if the law of the 1991 PSDA can be circumvented with impunity under the existing “practice” of law. Isn’t this true?
All that you and Diane Coleman have indicated should be a WARNING to the public about the nature of the advance directive in the for-profit structure of the Medical Industrial Complex.
In the UK, the government distributes ‘advance directlves’ via their main end of life care contractor Macmillan and NHS England that advise patients they cannot use an advance directive to refuse ‘pain relief and sedation’ ie comfort care ie being murdered with an overdose of morphine and midazolam.
Great system – doesn’t really respect a patient’s autonomy and certainly makes killing expensive to treat patients legal, doesn’t it!
Read the small print – you cannot ‘trust a doctor’ anymore.