Felice J. Freyer, medical reporter for the Providence Journal, reached out to Second Thoughts Connecticut when covering implementation of Rhode Island’s new MOLST law (Medical Orders on Life-Sustaining Treatment, in some states called POLST for Physician Orders on Life-Sustaining Treatment). Second Thoughts CT testified against a MOLST bill in Connecticut and was successful in blocking its passage.
Ms. Freyer opened her article, entitled Health Insight: New R.I. law aims to ease final days of terminally ill, with a story of someone in the late stages of a terminal condition who did not want to return to the hospital. Nonetheless, his nursing home sent him back when a medical crisis arose. His advance directive wasn’t effective in preventing that scenario. In contrast, a medical order signed by a qualified professional is expected to be more effective.
The Rhode Island bill did not face opposition, despite the concerns that have arisen in a number of states about abuses of this new type of medical directive. A lot of my personal education about these issues has come from research and advocacy done by two of Second Thoughts Connecticut’s leaders, Stephen Mendelsohn and Cathy Ludlum, as well as from attorney Jason Manne’s blog. (Some of the information they’ve provided is included in comments I submitted to the Institute of Medicine’s Committee on Approaching Death.)
Ms. Freyer demonstrated some responsible and balanced journalism by reaching out to Second Thoughts Connecticut and interviewing both Stephen and Cathy via e-mail. The resulting article included the following discussion and quotes:
[Maureen] Glynn [described as “the lawyer who co-chairs the coalition that pushed for the law”] said there was no major opposition to the MOLST law when it came up in Rhode Island. But in Connecticut, a similar proposal failed after a disability-rights group objected. Two members of that group, Second Thoughts Connecticut, shared their concerns with me via email.
Some people with disabilities fear that MOLST laws, already in place in several states, could result in denial of life-saving treatment to those who want it. Although MOLST is supposed to be voluntary, these activists say some nursing homes have presented it as mandatory. And when emergency personnel see that pink sheet tacked to the wall, will they read all its details or will they assume it means “do not resuscitate”?
Cathy Ludlum, of Second Thoughts Connecticut, says that “many people with severe disabilities feel personally threatened” by the law’s definition of “terminal illness” as “an incurable or irreversible condition that, without the administration of life-sustaining procedures, will, in the opinion of the attending physician, result in death.”
“By definition,” Ludlum said, “we have incurable and irreversible conditions, and many of us use life sustaining procedures every day of our (hopefully long) lives.”
These worries show that MOLST, like any medical intervention, has benefits but also hazards. …
To read the full article, go here.
Though Freyer says that MOLST is “only for people whose illness is terminal,” she also reports that, “starting Jan. 1, hospitals and nursing homes have been required to offer the form to patients upon admission — although, importantly, there is no requirement to fill it out.”
This makes me wonder, what do facility staff say when they provide the form to newly admitted patients? “I have to provide you this form but, if you’re not terminal, then don’t fill it out?” Or if you fill it out, but are not terminal, what will happen? Since the form has to be signed by a “physician, nurse practitioner, advanced practice registered nurse, or physician assistant,” can any one of them advise you whether you are “terminal” enough to fill out and sign the form? Do they have to examine you or read your medical chart to figure out what to say to you? Will they tell you to “void” the form if you filled it out but are not terminal?
None of this gives me any confidence that the abuses that concern people with disabilities will be avoided in Rhode Island. – Diane Coleman
It should be noted, as I told Ms. Freyer, that Rhode Island’s regulations governing MOLST under the “Rights of the Terminally Ill Act,” dated September 2013, have an expansive definition of “terminal condition” that sweeps in many people with long-term disabilities who are nowhere near death: http://sos.ri.gov/documents/archives/regdocs/released/pdf/DOH/7387.pdf RI MOLST law at http://law.justia.com/codes/rhode-island/2012/title-23/chapter-23-4.11/chapter-23-4.11-3.1
“1.25 ‘Terminal condition’ means an incurable or irreversible condition that, without the
administration of life sustaining procedures, will, in the opinion of the attending physician,
result in death.”
This expansive definition of “terminal condition” is remarkably similar to the definition in the 2009 New Hampshire assisted suicide bill that was soundly rejected: http://notdeadyet.org/2009/01/new-hampshire-poised-to-redefine.html
Thus under Rhode Island’s MOLST laws and regulations, doctors will be REQUIRED to offer a MOLST to people with disabilities who are nowhere near terminal. As Jason Manne has pointed out a number of times, particularly in relation to the expansive POLST laws of New Jersey and Nevada, the longer a person’s life expectancy is, the greater the chance that wanted and beneficial care will be withheld by life-limiting POLST orders. Someone who may fear a lingering death and refuses CPR or intubation, or who was encouraged to refuse life-sustaining procedures by the facilitator, may wind up in an accident or go into anaphylactic shock from an allergy the next day, having just signed their own death warrant, even though they may well have been restored to earlier functioning.
It should also be noted that on Rhode Island’s MOLST form, the option most likely to lead to the patient’s earlier death is listed first, with the exception of CPR. This is typical of POLST paradigm forms nationally. Massachusetts always lists non-treatment first, showing the inherent bias of the form. Bernard Hammes has said that people tend to go for the first option listed: http://www.youtube.com/watch?v=xFsuXD68b0I (about 15 minutes into this video)
As for there being no opposition to MOLST in Rhode Island, that was not entirely the case. Rhode Island Right to Life did not support the bill. As they felt they had no chance in stopping the bill, they apparently negotiated to have Father Chris Mahar, a Catholic bioethics expert, on the MOLST committee in return for not opposing the bill. Given the definition of “terminal condition” in the regulations, I am not so sure this bargain was very effective in reigning in the paradigm. (My information on this comes from Christopher O’Brien, an EMT who is vice-president of Connecticut Right to Life, and who strongly opposed Connecticut’s MOLST legislation).
Here in Connecticut, we got leverage by defeating an open-ended MOLST pilot bill (HB 6521). While the bill passed the Public Health Committee unanimously, once we defeated assisted suicide, we were able to turn our full attention to stopping the MOLST bill, and it was not taken up by either the House or Senate. We now have four of our members on the MOLST committee at the Connecticut Department of Public Health, and Cathy Ludlum chairs a committee on underserved populations that also deals with the proposed MOLST pilot. Either we will get legislation that contains the full compliment of safeguards that we need to support it, or we will once again stop the bill until we get what we need.
Neither the MOLST or the POLST is safe if unilateral covert and overt (default) code status DNR is not exposed and stopped. All advanced directives can be misused by the hospitals to achieve fiscal expediency by means of hastening the death of the elderly/disabled to CAP costs of any further treatment that the hospitals KNOW will not be reimbursed.
Obviously, it is the elderly and the disabled on Medicare who will be targeted for budget constraints in BOTH he Medicare programs as there is growing lack of reimbursement for non beneficial over treatment, mistakes, errors, exceeding the diagnosis related group caps, etc. The elderly/disabled are more likely to exceed diagnosis related group caps, and when “falls” within the hospitals are considered “errors” and NOT reimbursed by CMS and private insurance, think how this impacts the elderly and the disabled.
If you read the paper by Dr, Thaddeus Mason Pope, the foremost historian and authority on Medical Futility and the Law, entitled “Involuntary Passive Euthanasia in the US Courts, written in 2012, you understand that the slippery slope for the elderly/disabled arrived many years ago. The unilateral DNR is treated by the courts as merely an “ethics” violation and NOT a tort or as crime. Dr. Pope indicated that physicians appear to prefer to ask for forgiveness AFTER the DNR code is written and acted upon rather than ASK for permission BEFORE the DNR is placed in the patients hospital charts.
Over the years, therefore, physicians/hospitals have felt safe in extrapolating DNR code status into the charts of the elderly/disabled in order to limit or withhold life-saving and life-extending treatments that they KNOW will not be reimbursed by Medicare or private Big Insurance. They appear to have immunity under the law to do this.
The term “terminal” like the term “medical futility” is open to different interpretations and therefore these terms can be misused by the hospitals/physicians for the fiscal expediency of the hospital as so desired.
In the meantime, who will blow the whistle for the “elderly” and the “disabled” and protect OUR autonomy to decide when we are better off dead —-which is supposed to be protected under current law, but IS NOT.
I believe that unilateral DNR code status iis and has been epidemic in our nation’s hospitals for many years. The for-profit clinics and practices have been able to profitably over treat patients up to the Diagnosis Related Group Cap (DRG) because of the federal statute that prevents age discrimination since the 1991 PSDA became law at the request of Medicare in 1991. Only in 2013 did government try to stop the cruel overtreatment of the elderly for profit by filing criminal charges against for-profit clinics/physicians for violating the Federal False Claims Law.