Posted on July 24, 2019 at 3:00 PM
by Craig Klugman, Ph.D.
One of the cornerstones of modern bioethics, at least in the area of death and dying, is the notion of autonomy, that people are able to make decisions about medical care at the end of life. One way that they can exercise autonomy is by completing advance directives—directives to physicians and families (i.e. living wills), powers of attorney for health care, and POLSTs. A new federal bill proposed by 3 Republicans (Cramer, Daines, and Blackburn) in the Senate might cut off federal funding for most hospitals that followed patient orders to withdraw and withhold medical care for the purposes of allowing a patient to die:
No funds appropriated by Congress for the purpose of paying (directly or indirectly, in whole or in part) for the provision of health care services shall be paid to any entity, unless the entity certifies to the Secretary of Health and Human Services (referred to in this Act as the “Secretary”) that the entity respects all human life and patient rights by ensuring that any health care practitioner employed by, or utilizing the facilities or resources of, such entity. -S. 1993
“All human life” is then defined to include all patients who are “unborn, newly born, born prematurely, pregnant, elderly, mentally or physically disabled, terminally ill, in a persistent vegetative state, unresponsive or comatose, or otherwise incapable of self-advocacy”. This bill, seeks to create a federal definition of human life which would extend from conception to the grave. But by lumping this all together, the politicians would treat a fetus born at 20 weeks (not currently survivable) and someone at age 90 dying of a painful cancer the same.
S. 1993 is titled “A bill to restrict Federal funding for health care entities that do not respect all human life and patient rights” and “Patient Rights Act.” In reality, this bill is quite the opposite—rather than being about protecting patient rights, it is about forcing hospitals and patients to abide by the narrow religious and philosophical views of the bill’s authors. The implications of this bill would be staggering for health care. The bill would end up prohibiting safe medical interventions at the beginning and the end of life. Any facility where procedures such as abortion, embryonic and fetal experimentation, genetic experimentation research, or even aid-in-dying are done would be at risk of losing all federal funding. Realistically, no health care institution is financially viable without some federal dollars.
On the positive side, this bill treats people living with disabilities the same as everyone else. It ensures there cannot be discrimination in medical care for them. Ethically, this has always been true and the extra legal protection ensures it is good. But that is the only plus to this legislation.
At the beginning of life, the bill specifically names a fetus as being equal as a patient to the woman carrying the pregnancy. Perennial bills introduced at every Congress to specifically to declare life as beginning at conception have failed, so now politicians are trying to achieve the same aim from a slightly different direction. This new efforts comes after a slate of state lawshave adopted a position of life beginning at conception (Alabama, Alaska, Arkansas, Colorado, Kansas, Oklahoma, Virginia, Utah). The bill may also prohibit artificial reproductive technologies because of the rate of unsuccessful transfers and the number of embryos stored and destroyed.
At the end of life, the bill states that no decision can be made that “intentionally end[s] the life of, or otherwise harm[s], any patient… does not institute a do-not-resuscitate order or a similar order with respect to any patient for any reason without obtaining the prior consent of an applicable individual.” A patient, or their legal surrogate, would have to complete an informed consent process before a DNR order could be issued. Several states such as Texas have adopted these rules on the mistaken belief that doctors enter DNR orders without patients and their families knowing (they do not. There is no evidence that this is a thing). More specifically, the law would require that patients and surrogates who are even brought the option of a DNR must be able to be transferred to another facility. An unrepresented patient who is unconscious would not be able to have a DNR, no matter their level of suffering or likelihood of survival.
The bill might chill organ donation, especially practices such as donation after cardiac death where dying is orchestrated to preserve the organs. In that scenario, the medical action is not to benefit the patient, so would be an offense under this bill.
The bill would also prohibit aid-in-dying when an increasing number of states are permitting it. The bill’s language relies on a notion of double effect saying that if the intention of withdrawing or withholding care is to lead to the patient’s death, then such action is a violation of the law. As a federal law, this prohibition would override the 9 states that have passed assisted death statutes or had courts declare it permissible (California, Colorado, DC, Hawaii, Maine, Montana, New Jersey, Oregon, Vermont, Washington). Considering Republicans claim to be the party of state’s rights, this bill certainly undermines that philosophy.
Institutions that violate the dignity of life would be flagged in a public database and prohibited from receiving any sort of federal funding for a period of one year. For patients and families that feel they were injured under this law, they would have a right to seek recompense under civil lawsuits. Even more disconcerting is that the act of being offered a DNR or talking about organ donation might be enough to trigger a lawsuit even if the hospital has a mechanism in place for dealing with these disagreements. In a way, hospitals would need to be mind readers of what patient’s philosophical beliefs before even offering medical treatments.
With only three sponsors and no calendar date for committee action, this bill is unlikely to become law. It is currently assigned to the Senate Committee on Health, Education, Labor and Pensions. There is no companion bill in the House and with a Democratic majority, the bill would be unlikely to pass the House even if brought up for a Senate vote. But, sometimes these bills find themselves attached to a budget or other must-pass bill as amendments—a way to sneak in an unpopular policy.
This bill would enforce a singular view of morality from a specific religious position on all doctors, patients, and health care institutions. While similar efforts to affect patient decision-making and limiting physician autonomy have failed, the new target is hospitals and health institutions. After all, if hospitals fear having procedures done then they will prohibit their staff from doing them. Despite the dim prospects for this bill, it is important that all those in health fields who see this effort as a Trojan Horse it is contact their state senators and urge them to vote against this bill if it ever comes up. That call (yes, pick up the phone) is worth more if your senatorserves on the Committee on Health, Education, Labor and Pensions. Arguing against the damage this bill does to patient and physician autonomy is easier at this early stage than if it is later passed onto the entire Republican-controlled Senate.
For more information on contacting your senators, click here.