Proust on Treating Chronic Illness

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The need to control health care cost is a central challenge for health and economic policy. Other than the high prices we pay in the U.S., chronic illness is a main driver of cost escalation, especially for Medicare.  Seventy-six percent of Medicare spending is on patients with five or more chronic diseases, including heart disease, metabolic syndrome, end-stage renal disease, and cancer. Treatment usually doesn’t lead to a cure, but it does tend to extend patients’ lives.

 Prolonging life is one of the triumphs of medicine when the result is reasonably good health. But often costly treatments for chronic illnesses simply prolong the dying process, inevitably raising difficult questions about setting limits. “It is a great miracle that medicine can almost equal nature in forcing a man to remain in bed, to continue on pain of death the use of some drug.” That statement would not be out of place in current health policy debate, but it was written by Marcel Proust in 1923 in Remembrances of Things Past: Volume III – The Captive, The Fugitive, Time Regained. The rest of the passage, which follows, resonates today.

“I learned that a death had occurred during the day which distressed me greatly, that of Bergotte. It was known that he had been ill for a long time past. Not, of course, with the illness from which he had suffered originally and which was natural. Nature hardly seems capable of giving us any but quite short illnesses. But medicine has annexed to itself the art of prolonging them. Remedies, the respite that they procure, the relapses that a temporary cessation of them provokes, compose a sham illness to which the patient grows so accustomed that he ends by making it permanent, just as children continue to give way to fits of coughing long after they have been cured of the whooping cough. Then remedies begin to have less effect, the doses are increased, they cease to do any good, but they have begun to do harm thanks to that lasting indisposition. Nature would not have offered them so long a tenure. It is a great miracle that medicine can almost equal nature in forcing a man to remain in bed, to continue on pain of death the use of some drug. From that moment the illness artificially grated has taken root, has become a secondary but a genuine illness, with this difference only that natural illnesses are cured, but never those which medicine creates, for it knows not the secret of their cure.”

3 Responses to “Proust on Treating Chronic Illness”

  1. Carol Eblen

    The passage above certainly resonates today when we think in terms of the long standing cruel “over treating” for the profit motive of elderly/disabled Medicare/Medicaid patients with later stage diseases that would, no doubt, end their lives — and where there was NO reasonable chance that the “quality” of their treatment- extended lives, if known to them, would make their lives worth extending. Finally, after 22 years, the government (the Obama Administration) is getting around to prosecuting non beneficial over treatment for profit using the federal false claims law. Also, The ABA offered an opinion to Congress that the PSDA will allow Medicare not to reimburse physicians/hospitals for life-saving or life-extending treatments that are in opposition to the patients advanced directive to refuse such treatments — so some action to clarify the PSDA may be taken by the Congress or the Executive in the near future —we hope!

    (Thank God, there is no such thing as “natural death” today! That is, if one is old and ill/diseased and under the care of a physician and/or a hospice, this is as close to a natural death (without pain) as is possible. Natural death often times is a very long process and very painful. Hospice is the closest we can get to natural death without pain and is a good solution — but probably not in its current failed form and structure.

    The Hospice Entitlement has not solved the problem of the ever growing end-of-life costs of dying of our growing elderly population to the extent thought possible when the Patient Self Determination Act (PSDA) was passed by the Congress at the request of Medicare in 1991.) Patients are still being over treated in the outpatient setting and NOT being referred to Hospice soon enough to avoid expensive inpatient care that is often the result of the expensive outpatient care that is often non beneficial over treatment of the elderly Medicare/Medicaid patient or the result of complications of the outpatient treatments.

    Under current law, the future “quality” of the patient’s life can only be determined/estimated by the patient (or the surrogate) if and when there is an honest diagnosis and prognosis that is given to the patient in both the outpatient and the inpatient setting by the physician who is treating the terminal disease —AND when there is informed consent for the appropriate standard of care that will be delivered by the treating physician based on the educated prognosis that is SHARED with the patient in the outpatient setting and the inpatient setting on an ONGOING Basis. Unfortunately, it was indicated in an article published by the NIH library that the majority of patients being treated for cancer in the outpatient setting think that they are getting “curative care” and don’t understand that the care is merely palliative and won’t lead to any kind of cure. .

    Unfortunately, for-profit clinics/physicians/private hospitals were not put under the provisions of the 1991 Patient Self Determination Act and believed that they had no legal obligation to seek informed consent for one of the two legal standards of care created by the legal effect of the Medicare Hospice Entitlement (1986) when combined with the provisions of the 1991 PSDA. The two legal standards of care are (1) Curative where everything feasible is done to cure the patient and to keep the patient alive and (2) Palliative Care/transition to Hospice in the last six months of life.

    Obviously, The Congress and Medicare thought that physicians would voluntarily seek informed consent for the standard of care that was in the best interests of the patient but, of course, a good percentage of physicians did not volunteer to do this because there is NO profit for the physician’s corporation in doing nothing for the patient and advising the patient to do nothing and transition to Hospice as needed for pain relief at the end of life. Also, under the federal age discrimination statute, curative care could be provided up to the Diagnosis Related Group Cap for the disease/cancer no matter the advanced age of the patient, or, for that matter, in spite of any other comorbidities the elderly/disabled patients might be suffering, as well.

    Unfortunately, the Congress and Medicare/private insurers thought that the States would implement the PSDA in state law to reach two of the most important GOALS of the 1991 PSDA, that is (1) to prevent cruel over treatment of the elderly for profit and (2) to save money when elderly “educated” patients would no longer die in expensive ICUs and CCUs at great expense to the government because they were over treated to begin with or subject to complications etc. because of their advanced age. It was the vision of the 1991 PSDA that elderly patients who were given honest prognoses and afforded informed consent to one standard of care or the other would freely CHOOSE Hospice and die more comfortably and out of pain in their own residences or residential nursing homes and NOT in expensive ICU and CCUs in the nation’s Acute Care Hospitals that receive “public funds.”

    But, most of the States failed to do this. New York and several other states have just recently passed (in the past three years) new laws wherein treating physicians do have a legal obligation to tell their patients about the other legal standard of care, and, of course, if physicians/hospitals over treat the elderly patients today, (and for many years now) the reimbursement protocols of Medicare/private insurers punish physicians/hospitals by withholding or reducing reimbursements.

    As a consequence Medicare/Medicaid patients often (unknowingly) become charity patients for the hospitals and the unilateral covert/overt (default) DNR Code Status becomes a means for the physicians/hospitals to limit indicated treatments to cap unreimbursed Medical costs. This is WRONG and illegal under current federal and most state law unless “medical futility” is invoked under some due process procedure. Hosp9itals/physicians can’t YET shorten the lives of patients because they are NOT paid for the treatment to keep them alive as indicated in EMTALA and the PSDA.

    Unfortunately, the bioethicists, who are not schooled in the law, apparently, have not condemned the use of the unilateral default DNR code status to cap indicated treatments that won’t be reimbursed because Medicare/private insurers have developed reimbursement protocols that refuse reimbursement for non beneficial over treatment, errors, mistakes, omissions and the complications thereof. Elderly/disabled Medicare Patients have no idea that DNRs are shortening their lives and no idea that they are charity patients for the hospitals because there is no law requiring Medicare/Medicaid to inform patients that their hospital treatment was not reimbursed by Medicare/Medicaid because of mistakes, errors, or non beneficial over treatment. For obvious reasons, these patients don’t owe anything for non beneficial over treatment, mistakes, and errors, that were committed.

    Under the 1991 PSDA elderly/disabled Medicare/Medicaid patients can decide that any further treatment is FUTILE for them and it doesn’t have to be found to be “Medically” futile under hospital policy and existing law. Of course, medical futility will be very narrowly defined, if ever, under all existing laws, if it is ever actually defined by the courts because “quality” and “extra time to live” etc. and “medical futility” are all terms that will defy ONE definition under the law. The higher courts have already advised that the lives of patients cannot be shorten without their informed consent.

    Of course, we need a solution to the high costs of treating our elderly population who are fairly targeted for the most logical reduction of end of life costs when they are allowed to choose to shorten their lives to shorten their suffering under a certain death.

    I believe that Obama Care and the IPAB will make non beneficial over treatment almost impossible when it becomes law. But in the meantime, errors and mistakes will still be made by hospitals and physicians, and it looks like “the powers that be” want to run a trial in 2014 wherein elderly Medicare/Medicaid patients (and all patients) will be on BOTH Curative Care and Palliative Care/transition to Hospice at the same time —with the view, apparently, that the treating physicians will then stop over treating in the outpatient setting and will refer patients to Hospice sooner in the course of their terminal illnesses and thus prevent the expensive hospitalizations that are so often the result of outpatient and inpatient “curative” treatment of elderly patients wherein there were mistakes and errors made by hospitals/physicians that are NOT NOW reimbursed by Medicare and its private partners, Big Insurance. Errors and mistakes are buried with unilateral covert and overt DNR Code Status that is extrapolated into the medical charts of patients to limit further treatments that the Hospitals/Physicians KNOW will not be reimbursed.

    AND —this concurrent entitlement to both Curative and Hospice will take years to accomplish if approved at all by the Congress. AND – why would we need a Hospice entitlement at all (that costs millions and millions of dollars and that is often abused by for-profit and not-for-profit hospices) if Hospice becomes merely an extension of Curative care because The Congress will change the law to permit concurrent entitlement to Curative Care and Palliative Care/Hospice in the last six months of life?

    Wouldn’t it be easier and more cost effective for the bioethicists to recommend that The Executive or the Congress of the USA clarify the 1991 PSDA as to the patients’ rights to shorten life to shorten suffering and as to their rights to choose to live if the life-extending treatment isn’t futile?

    Why wouldn’t it be better for the patients and easier and cheaper for everybody if either The Executive or the Congress mandated right now, or as soon as possible, that all treating physicians SEEK informed consent for one or the other legal standards of care currently reimbursed under the Medicare programs as a means of protecting the “informed consent” provisions that exist in current law? .

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