It is a conversation everyone dreads: Your illness is terminal. Your doctor informs you that most patients at this stage live less than a year. There will be many difficult decisions ahead. Some treatment options may prolong your life, others may bring you comfort as your health declines. In 45 states -- including Maryland and Virginia -- this conversation would include a process to elicit your choices to receive or forego various interventions and document those choices in your medical record. The District of Columbia is not one of those places.
D.C. Councilmembers Yvette Alexander and Mary Cheh recently introduced the Health Care Decisions Act of 2015 to remedy this. This bill would give patients nearing the end of life the option to have their medical providers issue a Medical Order for Scope of Treatment (MOST).
A MOST -- called a MOLST or POLST in other places -- guides conversations between a patient and the patient's medical team about specific treatment options and interventions in light of the expected course of the condition. A MOST protocol would give District residents the peace of mind that comes from ensuring that family and health care providers understand their wishes, especially when it becomes difficult or impossible to communicate.
The Act is based on several years of extensive research led by the DC Appleseed Center for Law and Justice, an independent public policy organization in Washington D.C. Last week, DC Appleseed Board Member Bill Stein testified before the D.C. Council Committee on Health and Human Services in support of the Health Care Decisions Act. He outlined what we've learned over the last several years: that detailed conversations among patients, families, and physicians are the basis of effective, patient-centered end-of-life care. We also learned that such conversations rarely take place. This is especially true for certain demographic groups, including African-Americans.
As research has shown, a MOST is far more likely than current practice to result in the faithful implementation of a patient's wishes. A MOST encompasses a much wider array of possible interventions than a do-not-resuscitate order (DNR). A DNR conveys a patient's wishes about cardiopulmonary resuscitation, but does not address occasions for many other procedures that can occur in the course of a terminal disease. A DNR is only effective in the health care facility where the order is issued; a MOST is portable, meaning it is legally effective across medical facilities, EMS, and outpatient treatment.
A MOST is also far more specific than an advance directive. Even if a patient has taken the initiative to create that document, an advance directive is not disease-specific. Health care providers may never even learn of the advance directive's existence. A MOST is placed prominently in the patient's medical chart, so health care providers will always be aware of the patient's choices.
A MOST is intended to inform, facilitate, memorialize, respect, and effectuate the patient's decisions regarding his or her end-of-life treatment. It is not intended to influence those decisions. A patient's decision to obtain the full range of appropriate medical interventions should be respected equally as a patient's decision to forgo all medical intervention.
A MOST is also not a vehicle for patients to take proactive measures to end their lives, as another bill before the D.C. Council contemplates. Whether to give District residents that option is a separate debate. Oregon allows for "death with dignity" and also has the oldest POLST program in the country, but as Susan Tolle, a leader of Oregon's POLST program, told the California HealthCare Foundation in December, the two are totally separate: Two out of 1,000 patients who die in Oregon choose death with dignity; the POLST program focuses on the other 998.
Establishing a MOST protocol would bring the District up to date with the national consensus about patient-centered end-of-life care. DC Appleseed believes that all District residents deserve the opportunity to have this structured conversation with their providers. We hope the D.C. Council will continue to lead on this issue of such fundamental importance to patients and their families by approving the Health Care Decisions Act this fall.